La Valutazione dei pazienti pediatrici disabili per l'accesso alle cure palliative: validazione di un nuovo strumento
10.54103/dn/17791
INTRODUZIONE: Esaminando la letteratura, non sono emersi lavori sulla presenza di una rete di cure palliative dedicata alla popolazione pediatrica disabile italiana, tuttavia, si registra un aumento della prevalenza di bambini con malattia radicata e/o grave disabilità che necessitano di tali cure. Persiste la difficoltà di definire quando un bambino diventi incurabile. Insieme alla diagnosi di incurabilità, l'altro fattore cruciale è l'entità dei "bisogni di cura".OBIETTIVI: lo scopo dello studio è quello di costruire uno strumento di valutazione per definire i criteri di accesso alle cure palliative pediatriche per i pazienti con malattia avanzata e/o grave disabilità. 
METODI: è stato condotto uno studio osservazionale, prospettico, multicentrico, utilizzando la scala Clinical Assessment Tool (CAT), che è stata proposta dall'hospice pediatrico di Padova (Italia) senza validazione formale. Abbiamo studiato un campione non randomizzato di 101 pazienti di cinque strutture sanitarie del nord Italia. Abbiamo modificato la scala CAT aggiungendo item di altri strumenti utilizzati nelle cure palliative. Lo studio è stato diviso in due periodi a distanza di un mese, al fine di valutare l'evoluzione clinica dei pazienti.
RISULTATI: la consistenza interna dello strumento CAT era buona (alpha=0,83). L'analisi fattoriale esplorativa ha mostrato carichi accettabili su ogni item. I valori predittivi positivi e negativi erano 0,97 e 0,98, rispettivamente.
CONCLUSIONI: la scala è affidabile nell'identificare i soggetti bisognosi di cure palliative pediatriche e sembra uno strumento promettente per valutare i bisogni di cure palliative nei bambini con malattia radicata e/o grave disabilità.
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Alessandra Di Bari
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Dissertation Nursing
disabilità
La Valutazione dei pazienti pediatrici disabili per l'accesso alle cure palliative: validazione di un nuovo strumento
Text.Serial.Journal
https://riviste.unimi.it/index.php/dissertationnursing
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2022-07-29
2022-05-06
2022-07-29
2022-07-29
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DN
Alessandra Di Bari
2022/07/29
10.54103/dn/17791
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Centro NEMO, Grande Ospedale Metropolitano Niguarda, Italy
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Di Bari A, Destrebeq A, Osnaghi F, Terzoni S. Traduzione e validazione in italiano della scala Revised FLACC per la valutazione del dolore nel bambino con grave ritardo mentale. Pain Nursing Magazine, 2013;
Assessment of disabled paediatric patients for accessing palliative care: validation of a new tool
https://riviste.unimi.it/index.php/dissertationnursing/article/download/17791/16219
1
                                                                                                                          DOI: 10.54103/dn/17791




             DISSERTATION NURSING
            Journal Homepage: https://riviste.unimi.it/index.php/dissertationnursing

Validation Study

    Assessment of disabled paediatric patients for
   accessing palliative care: validation of a new tool
                                  1
Eleonora Maria Migliavacca         , Alessandra Di Bari2
1 IRCCS   Ca’ Granda Ospedale Maggiore Policlinico di Milano, Milan, Italy
2 NEMO    Centre for disabled care, Grande Ospedale Metropolitano Niguarda, Milan, Italy



Findings:                                          ABSTRACT
This article describes the validation BACKGROUND: By reviewing the literature, no work has emerged about the
process of the first Italian presence of a Palliative Care Network dedicated to the Italian disabled pediatric
assessment tool for defining access population, however, there is an increase in the prevalence of children with
criteria to Paediatric Palliative ingrained illness and / or serious disabilities who are in need of such treatment. The
Care.                                 difficulty in defining when a child becomes incurable persists. Along with the
                                                   diagnosis of incurability, the other crucial factor is the extent of "care needs".

                                                   AIM: The aim of the study is to build an assessment tool for defining access
                                                   criteria to Pediatric Palliative Care for patients with advanced illness and / or severe
                                                   disability.

                                                   METHODS: An observational, prospective, multicenter study was conducted, by
                                                   using the Clinical Assessment Tool (CAT) scale, which has been proposed by the
                                                   paediatric hospice of Padua (Italy) without formal validation. We studied a non-
                                                   randomized sample of 101 patients from five healthcare facilities in Northern Italy.
                                                   We modified the CAT scale by adding items from other tools used in Palliative
                                                   Care. The study was divided into two periods at a distance of one month, in order
                                                   to assess the patients’ clinical evolution.

                                                   RESULTS: Internal consistency of the CAT tool was good (alpha=0.83).
                                                   Explorative factor analysis showed acceptable loadings on each item. Positive and
                                                   negative predictive values were 0.97 and 0.98, respectively.

                                                   CONCLUSIONS: The scale is reliable in identifying individuals in need of
                                                   Pediatric Palliative Care and seems a promising tool for assessing the needs for
                                                   palliative care in children with ingrained illness and/or severe disability.




                                              KEYWORDS: Palliative care, pediatric, disability


      Corresponding author:                                              12                                    Submission received: 06/05/2022
      Eleonora M. Migliavacca: eleonoramariamigliavacca@gmail.com
                                                                                                        End of Peer Review process: 28/06/2022
      IRCCS Ca’ Granda Ospedale Maggiore Policlinico
                                                                                                                         Accepted: 08/07/2022
      Via Francesco Sforza 35, Milan, Italy
                                                      Via Festa del Perdono 7, 20122 Milan, Italy
                                                                                      This work is licensed under a Creative Commons
              Dissertation Nursing 1 (29/07/2022)                                     Attribution-NonCommercial-NoDerivatives 4.0 nternational
                                                                                                                           DOI: 10.54103/dn/17791




             DISSERTATION NURSING
            Journal Homepage: https://riviste.unimi.it/index.php/dissertationnursing

Studio di Validazione



       La Valutazione dei pazienti pediatrici disabili per
     l'accesso alle cure palliative: validazione di un nuovo
                           strumento
                                   1
Eleonora Maria Migliavacca          , Alessandra Di Bari2
1 IRCCS   Ca’ Granda Ospedale Maggiore Policlinico di Milano, Milan, Italy
2 NEMO    Centre for disabled care, Grande Ospedale Metropolitano Niguarda, Milan, Italy



Riscontri:                                           ABSTRACT
Questo articolo descrive il processo di
                                                     INTRODUZIONE: Esaminando la letteratura, non sono emersi lavori sulla
validazione del primo strumento Italiano di
valutazione per definire i criteri di accesso alle   presenza di una rete di cure palliative dedicata alla popolazione pediatrica disabile
cure palliative pediatriche.                         italiana, tuttavia, si registra un aumento della prevalenza di bambini con malattia
                                                     radicata e/o grave disabilità che necessitano di tali cure. Persiste la difficoltà di
                                                     definire quando un bambino diventi incurabile. Insieme alla diagnosi di incurabilità,
                                                     l'altro fattore cruciale è l'entità dei "bisogni di cura".

                                                     OBIETTIVI: Lo scopo dello studio è quello di costruire uno strumento di
                                                     valutazione per definire i criteri di accesso alle cure palliative pediatriche per i pazienti
                                                     con malattia avanzata e/o grave disabilità.

                                                     METODI: E’ stato condotto uno studio osservazionale, prospettico, multicentrico,
                                                     utilizzando la scala Clinical Assessment Tool (CAT), che è stata proposta dall'hospice
                                                     pediatrico di Padova (Italia) senza validazione formale. Abbiamo studiato un
                                                     campione non randomizzato di 101 pazienti di cinque strutture sanitarie del nord
                                                     Italia. Abbiamo modificato la scala CAT aggiungendo item di altri strumenti utilizzati
                                                     nelle cure palliative. Lo studio è stato diviso in due periodi a distanza di un mese, al
                                                     fine di valutare l'evoluzione clinica dei pazienti.

                                                     RISULTATI: La consistenza interna dello strumento CAT era buona (alpha=0,83).
                                                     L'analisi fattoriale esplorativa ha mostrato carichi accettabili su ogni item. I valori
                                                     predittivi positivi e negativi erano 0,97 e 0,98, rispettivamente.

                                                     CONCLUSIONI: La scala è affidabile nell'identificare i soggetti bisognosi di cure
                                                     palliative pediatriche e sembra uno strumento promettente per valutare i bisogni di
                                                     cure palliative nei bambini con malattia radicata e/o grave disabilità.


                                                KEYWORDS: cure palliative, pediatria, disabilità
        Corresponding author:                                              13                                   Submission received: 06/05/2022
        Eleonora M. Migliavacca: eleonoramariamigliavacca@gmail.com
                                                                                                         End of Peer Review process: 28/06/2022
        IRCCS Ca’ Granda Ospedale Maggiore Policlinico
                                                                                                                          Accepted: 08/07/2022
        Via Francesco Sforza 35, Milan, Italy
                                                        Via Festa del Perdono 7, 20122 Milan, Italy
                                                                                       This work is licensed under a Creative Commons
              Dissertation Nursing 1 (29/07/2022)                                      Attribution-NonCommercial-NoDerivatives 4.0 nternational
                                                                                                                         DOI: 10.54103/dn/17791




          DISSERTATION NURSING
          Journal Homepage: https://riviste.unimi.it/index.php/dissertationnursing



                                                                                The definition of eligibility criteria of a newborn baby
                                                                                / child / adolescent for PPC is far from simple.
BACKGROUND
                                                                                Adopting the eligibility criteria for Adult Palliative
Patients suffering from life-limiting / life-shortening                         Care in the pediatric area is not possible because
illnesses have developed during childhood a condition                           children have very different and specific disease
for which there is no therapy that can lead the person                          stories. The definition of Palliative Care Eligibility
to healing. These patients show conditions of clinical                          requires, in the pediatric field, the presence of an
deterioration and disability that last for many years, as                       incurable disease as a primary criterion: but not all of
premature death is potential but cannot be defined in                           the incurable pathologies require Pediatric Palliative
time (1). Patients with "life-limiting / life-threatening"                      Care, and the formulation of criteria that make a
conditions often have cognitive disorders,                                      patient eligible is complex. In some categories an
communicative difficulties, nutritional problems,                               extreme difficulty persists in defining when a child
seizures and fatigue. The European Association of                               becomes incurable. Therefore, in addition to the
Palliative Care (EAPC) defines the disease of these                             diagnosis of incurability, the other aspect that plays
patients as incurable, with complex needs and risk of                           the decisive role in defining eligibility for PPC is the
death (2). There has been a marked increase in the                              magnitude of the "problems" of the child and the
prevalence of children with ingrown illness and / or                            family and hence the care needs (4). Three distinct
severe disability: medical and technological progress                           levels can be identified, based on the priority of the
has in fact reduced mortality, but at the same time has                         patient’s needs and his/her physical response to
increased the survival of pediatric patients with                               therapy and treatments:
serious and potentially lethal disease. A new type of
                                                                                        1. First level of care - "palliative approach" in
patient with special, often integrated, multispecialistic
                                                                                case of low-medium care intensity, requiring basic
and inter-institutional needs has arisen. Such needs
                                                                                PPC interventions. Such interventions must be
are present during the whole lifespan, including
                                                                                warranted       by      all     health      professionals;
childhood and adolescence. These children require
                                                                                        2. Second level of care - "General PPC" in
Pediatric Palliative Care (PPC) (3–5). Even from a
                                                                                case of moderate / high intensity of care, requiring
numerical point of view, the problem is not to be
                                                                                the intervention of those practitioners who are
underestimated. It is estimated that there are more
                                                                                experienced in such disease, but also have specific
than 20 million children eligible for palliative pediatric
                                                                                training and competence in PPC. General PPC may
care worldwide. The World Health Organization
                                                                                also require support and supervision by a specialized
defines Palliative Care as "the active global care of the
                                                                                team;
body, mind and spirit of the child, and includes active
                                                                                        3. Third level of care - "Specialized PPC" in
support to the family." The purpose of Palliative Care
                                                                                case of high care intensity: these situations require
is, in fact, to obtain the highest possible quality of life
                                                                                continuous intervention of professionals dedicated
for the patient and for his family (6). For some years,
                                                                                exclusively to pediatric palliative care, working in
the idea that palliative care should be cross-sectional
                                                                                specific multiprofessional teams.
throughout the life of the patient has been accepted
worldwide, definitively supplanting the idea that they                          The need for palliative care in people with disabilities
should take place when there is no room for active                              has only recently attracted the attention of researchers
treatments.                                                                     (7,8). Research in this field has not appeared until the
                                                                                beginning of this century. There is still a limited
      Corresponding author:                                              14                                   Submission received: 06/05/2022
      Eleonora M. Migliavacca: eleonoramariamigliavacca@gmail.com
                                                                                                       End of Peer Review process: 28/06/2022
      IRCCS Ca’ Granda Ospedale Maggiore Policlinico
                                                                                                                        Accepted: 08/07/2022
      Via Francesco Sforza 35, Milan, Italy
                                                      Via Festa del Perdono 7, 20122 Milan, Italy
                                                                                     This work is licensed under a Creative Commons
           Dissertation Nursing 1 (29/07/2022)                                       Attribution-NonCommercial-NoDerivatives 4.0 nternational
                                                                                                                         DOI: 10.54103/dn/17791




          DISSERTATION NURSING
          Journal Homepage: https://riviste.unimi.it/index.php/dissertationnursing



empirical knowledge about the application of                                    persons with severe intellectual disability in the Italian
Palliative Care to people with intellectual disabilities                        setting.
(5,6,9–11). There is evidence that end-of-life care for
people with disabilities is of lower quality if compared
                                                                                METHODS
to the general population (7). It is also evident that
                                                                                Study population
people with intellectual disability are not sufficiently
                                                                                We enrolled a non-randomized sample of patients
involved in making decisions about the end of their
                                                                                aged 2 to 25 years, suffering from ingrained illnesses
own life. Such decisions are sometimes based on their
                                                                                ascertained by medical diagnosis, and responding to
quality of life and compliance with treatment; In
                                                                                the general worsening indices and “green lights” at
addition, potential life-saving treatments are offered
                                                                                the beginning of the study.
less frequently to people with intellectual disabilities
than patients who do not have such problems                                     Research approvals
(8,9,12). The consequences are extremely severe and                             We complied with the rules of the local ethical
include a risk of premature death and impaired quality                          committee; approval was obtained from the managers
of life. Most palliative care services in Italy do not                          of all the hospitals involved. The caregivers or legal
usually accept patients whose terminal condition is                             representatives of all patients gave their informed
not due to neoplastic diseases. Terminally ill persons                          consent, accordingly to the Italian law in force. The
with intellectual disability are in fact an invisible                           principles contained in the declaration of Helsinki and
population and often their specific needs are                                   in the Italian law on data protection were applied.
neglected, and are not seen as a priority or perceived
as potential problems (12). Moreover, the use of                                Design
subjective measures for assessing symptoms becomes                              This was an observational, prospective, multicentre
problematic for these people who have cognitive                                 study, conducted in five hospitals in Northern Italy
problems and communication difficulties (9).                                    (Ospedale Sant’Anna di Como, La Nostra Famiglia di
However, it may be possible to adapt one of the                                 Bosisio Parini, Casa di Gabri di Rodero, Ospedale dei
many existing measures (scale) or to use an indicator                           Bambini Vittore Buzzi di Milano, Centro Clinico
to assess the quality of life, quality of palliative care                       NEMO) dedicated to paediatric disabled patients.
and the care needs of these people (10,11). No
                                                                                Measures
literature has been found in this field so far. Nurses
                                                                                The tool used in the study is based on the Clinical
have the power to determine a positive change in
                                                                                Assessment Tool, which is a scale designed by the
their patients' life experiences, or to exert a negative
                                                                                Department of Health, Social Services and Public
influence. Quality of life thus becomes a central
                                                                                Safety of Northern Ireland. The assessment scale is
concept for all nurses (13). Service providers are
                                                                                targeted at children and young adults with chronic,
increasingly responsible for the quality of services
                                                                                long-term conditions. The instrument can describe
provided and the impact they have on people's lives.
                                                                                the child's conditions. The beginning of the scale is
The quality of life context also offers a holistic
                                                                                characterized by the inclusion of the "General
approach that nurses should use. In fact nurses play
                                                                                Worsening Indicators" taken from the project
an important role in identifying and meeting the
                                                                                "Teseo-Arianna" (Age.Na.s – Italian National Agency
health needs of the patient with intellectual disability
                                                                                for Regional Health Services) and the " Green Lights
(13). For these reason, we sought to validate a tool
                                                                                " for considering a child eligible for Pediatric
aimed at assessing the needs for palliative care in
                                                                                Palliative Care (14). Therefore, the elements of
      Corresponding author:                                              15                                   Submission received: 06/05/2022
      Eleonora M. Migliavacca: eleonoramariamigliavacca@gmail.com
                                                                                                       End of Peer Review process: 28/06/2022
      IRCCS Ca’ Granda Ospedale Maggiore Policlinico
                                                                                                                        Accepted: 08/07/2022
      Via Francesco Sforza 35, Milan, Italy
                                                      Via Festa del Perdono 7, 20122 Milan, Italy
                                                                                     This work is licensed under a Creative Commons
           Dissertation Nursing 1 (29/07/2022)                                       Attribution-NonCommercial-NoDerivatives 4.0 nternational
                                                                                                                         DOI: 10.54103/dn/17791




          DISSERTATION NURSING
          Journal Homepage: https://riviste.unimi.it/index.php/dissertationnursing



deterioration (for example: reduction of autonomy,                              CAT is shown in tables 1 and 2, in English and Italian
impaired self-care, intolerance to physical activity,                           respectively.
etc.) are included in the scale. The tool is divided into
11 evaluation areas: Breathing, Food intake, Seizures                             Modified CLINICAL ASSESSMENT TOOL
or altered states of consciousness, Vitality of skin and                                                            Write in score and
                                                                                         Care needs
tissues, Mobility, Continence and elimination,                                                                             date
Medications, Communication, Sleep and rest, Pain,                                         Breathing
and Specific / unexpected events.                                                        Food intake
                                                                                 Seizures or altered state of
Each area evaluates the presence or absence of a                                       consciousness
number of life-threatening clinical conditions, which                              Skin and tissue viability
receive a rating from 0 to 25 depending on the                                             Mobility
category. Based on the score, the patient needs the                              Continence and elimination
first level of care – palliative approach (score ≤ 29),                                  Medication
second level of care – general PPC (score 30 – 49) or                                 Communication
third level of care – Specialized PPC (score > 50).                                     Sleep and rest
                                                                                             Pain
In addition to the original scale, we chose to                                             Specific
introduce the assessment of "vomiting and diarrhea"                             sudden/unpredictable events
(taken from the EORTC QLQ-C30 scale) in the                                                TOTAL
Food Intake category; NPUAP staging was added to                                   Table 1 - Modified Clinical Assessment Tool (English)
the "Vitality of skin and tissues" domain. Finally, the
Revised Flacc scale was added to the "Pain" rating.
These characteristics were not added as individual
                                                                                  Modified CLINICAL ASSESSMENT TOOL
items, but were introduced in already existing parts of
the scale, to allow more precise assessment of the                                                                Dati di rilevazione e
                                                                                    Bisogni Assistenziali
                                                                                                                        punteggio
patient. For this reason, the scoring criteria remained
                                                                                        Respirazione
the same as in the original CAT. We chose to call the
                                                                                   Apporto nutrizionale
final tool “the Modified-CAT” to distinguish it from
                                                                                   Crisi epilettiche o stati
the original scale.                                                                 alterati di coscienza
                                                                                   Vitalità della cute e dei
Because of the need for preparing an Italian version
                                                                                            tessuti
of this modified CAT, we adopted the back-
                                                                                           Mobilità
translation method. The modified CAT was translated                              Continenza ed eliminazione
from English into Italian by two independent                                               Farmaci
translators (nurses with certified knowledge of                                       Comunicazione
English and experience in validation studies) and then                                 Sonno e riposo
back-translated into English by a teacher of English.                                       Dolore
The Revised FLACC is a separate scale; we chose to                                    Specifico evento
add the Italian version, validated and published by Di                           improvviso/imprevedibile
Bari et al. (15). The final list of items of the modified                                  TOTAL
                                                                                   Table 2 - Modified Clinical Assessment Tool (Italian)

      Corresponding author:                                              16                                   Submission received: 06/05/2022
      Eleonora M. Migliavacca: eleonoramariamigliavacca@gmail.com
                                                                                                       End of Peer Review process: 28/06/2022
      IRCCS Ca’ Granda Ospedale Maggiore Policlinico
                                                                                                                        Accepted: 08/07/2022
      Via Francesco Sforza 35, Milan, Italy
                                                      Via Festa del Perdono 7, 20122 Milan, Italy
                                                                                     This work is licensed under a Creative Commons
           Dissertation Nursing 1 (29/07/2022)                                       Attribution-NonCommercial-NoDerivatives 4.0 nternational
                                                                                                                        DOI: 10.54103/dn/17791




         DISSERTATION NURSING
         Journal Homepage: https://riviste.unimi.it/index.php/dissertationnursing



Data analysis                                                                  baseline, 69 patients (68.31%) had a score ≤ 29 (still
Internal consistency was assessed by calculation of                            69 at T1), 19 (18.81%) scored 30 to 49 (were 21 at T1,
Cronbach’s alpha coefficient. Exploratory factor                               20.79%), and 13 (12.87%) scored 50 or more (11 at
analysis was conducted after Bartlett’s test of                                T1, 10.89%).
sphericity and Kaiser-Meyer-Olkin’s measure of
sample adequacy. The positive and negative predictive                          Over the span of one month, 7 patients improved
values of the scale were calculated by comparing the                           their scores and 2 worsened. The positive and
scores provided by the modified scale with objective                           negative predictive values were 0.97 and 0.98
worsening or improvement of clinical condition as                              respectively. Only two patients (one who improved
documented in the medical records of our patients.                             the score from 41 to 14 points and the other who
Analysis was conducted with SAS® University                                    worsened it from 29 to 53) shifted to another
Edition for MacOS.                                                             category due to changes in their scores.

                                                                               The most compromised needs in the sample were
                                                                               breathing (37.6% of the total), food intake (76.23%),
RESULTS                                                                        mobility (81.18 %), continence (80.19%), medication
                                                                               (93.06%) and communication (69.30%). Moreover,
Between January 3 and February 27, 2017, 101                                   during data collection it was found that 13 children
patients were enrolled, 68 males (67%) and 33 females                          who had a score ≥ 50 points at baseline, 7 of them at
(33%). The study was predominantly centered on the                             T1, had a higher number of scheduled follow-up
pediatric patient, but also took into consideration                            consultations to the rest of the sample. In fact,
young adults (18-25 years). 94 patients were under the                         patients who show a high total score have a high
age of 18, and 7 were aged 18 to 25.                                           score in almost all domains investigated by the scale,
In 23 patients, disability was acquired through                                which means that they have generalized clinical
cerebrospinal lesions or traumas such as drowning,                             deterioration and are therefore followed by more
stroke, cardio-circulatory arrest and severe head                              specialists within the multidisciplinary team.
injury. In the remaining 78, disability was due to                             As regards the validation of the new scale, the rotated
congenital disorders caused, for example, by                                   factor pattern explained 67% of the variance with
chromosomal deletions or malformative/degenerative                             acceptable factor loadings (Table 3), which suggests
syndromes. In one case the disease was caused by the                           that all items contribute to describe the situation of
mother (fetal-alcohol syndrome).                                               these patients, without being redundant. The only
The most commonly occurring diseases in the sample                             exception was the “Specific sudden/unpredictable
were: Cornelia de Lange (11.88%), Double Infantile                             events” item, which loading was negative, indicating
Cerebral Paralysis (12.87%), Spinal Muscular Atrophy                           lack of correlation between this item and the others.
II (6.93%) and Tetanus Spastic Dystonia (6.93%).                               This finding can be explained by considering the
The other diseases included various forms of                                   nature of such events, which cannot be foreseen and
microcefalia, Down syndrome, and cromosomal                                    do not occur according to a specific pattern.
deletion problems.                                                             Nonetheless, this item appears necessary from a
                                                                               clinical point of view.
Data collection was carried out in two separate
moments (T0 baseline and T1 after one month)
performed by administering the modified-CAT. At
     Corresponding author:                                              17                                   Submission received: 06/05/2022
     Eleonora M. Migliavacca: eleonoramariamigliavacca@gmail.com
                                                                                                      End of Peer Review process: 28/06/2022
     IRCCS Ca’ Granda Ospedale Maggiore Policlinico
                                                                                                                       Accepted: 08/07/2022
     Via Francesco Sforza 35, Milan, Italy
                                                     Via Festa del Perdono 7, 20122 Milan, Italy
                                                                                    This work is licensed under a Creative Commons
          Dissertation Nursing 1 (29/07/2022)                                       Attribution-NonCommercial-NoDerivatives 4.0 nternational
                                                                                                                         DOI: 10.54103/dn/17791




          DISSERTATION NURSING
          Journal Homepage: https://riviste.unimi.it/index.php/dissertationnursing



                       Item                              Factor 1               These results demonstrate that the Clinical
Breathing                                                0.33                   Assessment Tool scale is a valid and reliable tool that
Food intake                                              0.81                   can certainly be of help in clinical practice. In support
Seizures or altered state of consciousness               0.48                   of this hypothesis, from the analysis of the collected
Skin and tissue viability                                0.3                    data, there were no significant differences between
Mobility                                                 0.63                   the application at baseline and T1. Administering the
Continence and elimination                               0.81                   scale requires 15 minutes: 10 for reviewing the clinical
Medication                                               0.89                   record and 5 for completing the assessment.
Communication                                            0.69
Sleep and rest                                           0.45                            Notwithstanding the length of the tool, it
Pain                                                     0.62                   appears easy to understand and leaves no room for
Specific sudden/unpredictable events                     -0.09                  personal interpretation. The instrument is presented
           Table 3 – Factor loadings of the items                               in that format because the ultimate goal is to
                                                                                investigate the most compromised care needs in
                                                                                patients who have communication difficulties and
DISCUSSION                                                                      therefore cannot express their own compromised
The initial problem was the difficulty in establishing                          needs independently. The tool gives a general picture
the need to initiate Paediatric Palliative Care for                             of all the possible complications that the patient can
severely disabled people, and on the other hand, the                            present. In addition, the patient's anthropometric
total absence of useful tools for the purpose in the                            recordings are not provided for the scale compilation,
literature. The only available tool had never been fully                        so vital parameters are not needed, but direct
validated.                                                                      observation and review of the clinical record is
         Our Modified-CAT has shown good internal                               sufficient.
consistency. Factor analysis has shown that all items
have a role in depicting the clinical situation of the                          Limitations
patient. In addition, positive and negative predictive                          A limitation of the study was the lack of involvement
values (0.97 and 0.98 respectively) indicate that the                           of the caregiver / family in the assessment. The latter
scale has a good ability to discriminate patients who                           could provide useful information on the applicability
need palliative care from those who do not need it.                             and ease of use of the instrument at home, including
The Clinical Assessment Tool is able to investigate                             those outside clinical practice, but close to children
the level of compromised needs, which influences the                            who present such problems. In addition, there was a
level of cure response needed for the child with                                partial difficulty in finding and contacting structures
incurable pathology.                                                            that featured a study population responding to the
         Children with high scores (50 points or more)                          inclusion criteria.
were hardly ever assisted at home. In addition, data
                                                                                In addition to the diagnosis of incurability, the other
collection at T1 showed that patients who showed a
                                                                                important parameter for eligibility to CPP is the
high score at baseline had more access to scheduled
                                                                                magnitude of the "problems" of the child and the
follow-up visits than the rest of the sample. Indeed,
                                                                                family (clinical, psychological, organizational, spiritual,
these patients present a generalized clinical worsening
                                                                                ethical), i.e. the needs of care by these triggered.
in almost all scale domains (eg, PEG, tracheostomy,
                                                                                Currently, in the worldwide scientific literature, there
with inability to walk and double incontinence).
                                                                                are no valid and specific tools for assessing care needs
      Corresponding author:                                              18                                   Submission received: 06/05/2022
      Eleonora M. Migliavacca: eleonoramariamigliavacca@gmail.com
                                                                                                       End of Peer Review process: 28/06/2022
      IRCCS Ca’ Granda Ospedale Maggiore Policlinico
                                                                                                                        Accepted: 08/07/2022
      Via Francesco Sforza 35, Milan, Italy
                                                      Via Festa del Perdono 7, 20122 Milan, Italy
                                                                                     This work is licensed under a Creative Commons
           Dissertation Nursing 1 (29/07/2022)                                       Attribution-NonCommercial-NoDerivatives 4.0 nternational
                                                                                                                         DOI: 10.54103/dn/17791




          DISSERTATION NURSING
          Journal Homepage: https://riviste.unimi.it/index.php/dissertationnursing



and hence compromised care needs in disability                                  5. Heslop P, Blair PS, Fleming P, Hoghton M,
patients, although several studies have demonstrated                               Marriott A, Russ L. The Confidential Inquiry into
the need to initiate a Palliative Care pathway for these                           premature deaths of people with intellectual
patients, especially in specific case of pediatric                                 disabilities in the UK: a population-based study.
patients. The Modified CAT can be used in clinical                                 The Lancet. marzo 2014;383(9920):889–95.
practice to evaluate compromised needs in this
category of patients. It has proven to be a reliable tool                       6. Wagemans A, van Schrojenstein Lantman-de Valk
in the pediatric population / young adult population                               H, Proot I, Metsemakers J, Tuffrey-Wijne I, Curfs
and could be extended to the adult population in                                   L. The factors affecting end-of-life decision-
order to create a unified assessment scale applicable                              making by physicians of patients with intellectual
to all those with disabilities. The scale is also an                               disabilities in the Netherlands: a qualitative study:
excellent tool for tracing the patient's clinical /                                Factors affecting end-of-life decisions for people
therapeutic outlook for long periods of time, thus                                 with ID. J Intellect Disabil Res. aprile
detecting those patients who, over the months, have a                              2013;57(4):380–9.
worsening or improvement in their Clinical condition.                           7. Tuffrey-Wijne I, Giatras N, Goulding L, Abraham
Future studies should pay attention to the                                         E, Fenwick L, Edwards C, et al. Identifying the
caregiver's/family's assessment of the applicability                               factors affecting the implementation of strategies
and ease of use of the instrument at home.                                         to promote a safer environment for patients with
                                                                                   learning disabilities in NHS hospitals: a mixed-
                                                                                   methods study. Health Serv Deliv Res. dicembre
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      Corresponding author:                                              19                                   Submission received: 06/05/2022
      Eleonora M. Migliavacca: eleonoramariamigliavacca@gmail.com
                                                                                                       End of Peer Review process: 28/06/2022
      IRCCS Ca’ Granda Ospedale Maggiore Policlinico
                                                                                                                        Accepted: 08/07/2022
      Via Francesco Sforza 35, Milan, Italy
                                                      Via Festa del Perdono 7, 20122 Milan, Italy
                                                                                     This work is licensed under a Creative Commons
           Dissertation Nursing 1 (29/07/2022)                                       Attribution-NonCommercial-NoDerivatives 4.0 nternational
                                                                                                                        DOI: 10.54103/dn/17791




         DISSERTATION NURSING
         Journal Homepage: https://riviste.unimi.it/index.php/dissertationnursing



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     Corresponding author:                                              20                                   Submission received: 06/05/2022
     Eleonora M. Migliavacca: eleonoramariamigliavacca@gmail.com
                                                                                                      End of Peer Review process: 28/06/2022
     IRCCS Ca’ Granda Ospedale Maggiore Policlinico
                                                                                                                       Accepted: 08/07/2022
     Via Francesco Sforza 35, Milan, Italy
                                                     Via Festa del Perdono 7, 20122 Milan, Italy
                                                                                    This work is licensed under a Creative Commons
          Dissertation Nursing 1 (29/07/2022)                                       Attribution-NonCommercial-NoDerivatives 4.0 nternational
