The PhD dissertation focuses on chronic oropharyngeal dysphagia (OD) in individuals with head and neck cancer and neurodegenerative diseases. The primary aim of the PhD was to investigate the impact of chronic oropharyngeal dysphagia on nutritional status and psychosocial dimensions as perceived by patients and informal caregivers. Preliminarily, the Functional Oral Intake Scale and the Dysphagia Handicap Index were validated into Italian and proved reliable and valid measures to assess feeding modality and Health-Related Quality of Life (HRQOL). Secondly, the 2-years course of social eating problems was investigated in 361 individuals with head and neck cancer after primary (chemo)radiotherapy and resulted associated with swallowing-related quality of life and symptoms measured at baseline and with nutritional status measured at baseline and at 6- month follow-up, besides tumour site, age, depressive symptoms, muscle strength, and hearing problems. A cross-sectional study on 57 individuals with chronic oropharyngeal dysphagia in consequence of head and neck cancer or neurodegenerative diseases and 37 informal caregivers found meal consumption patterns associated with instrumentally assessed swallowing function, nutritional status, and patients’ HRQOL. Besides, it highlighted the independence of well-being from patients’ clinical outcomes and the interdependence of patients’ and informal caregivers’ psychosocial dimensions. Finally, the problems, care needs and resources perceived by patients with chronic oropharyngeal dysphagia and their informal caregivers were addressed. A scoping review on care needs spotlighted their multifaceted nature and the dearth of research on the topic; care needs went beyond the physical and practical domains and included social, informational, and psychological issues. The qualitative investigation of problems, care needs and resources in 25 Italian patients and 18 informal caregivers yielded similar results. Besides negative aspects, coping strategies, personal capabilities, and social and healthcare support were described among resources to manage chronic oropharyngeal dysphagia. Perceived problems, care needs and resources were associated with quality of life, and mental health. The dissertation closes with the discussion of clinical implications of the studies and future research directions.
La tesi di Dottorato concerne la disfagia orofaringea cronica in persone con tumore del distretto testa-collo (HNC) e malattie neurodegenerative. Obiettivo primario del Dottorato è stato l’indagine dell‘impatto della disfagia orofaringea cronica sullo stato nutrizionale e sulle dimensioni psicosociali di pazienti e caregiver informali. Preliminarmente, la scala Functional Oral Intake Scale ed il questionario Dysphagia Handicap Index sono stati validati in italiano, attestandosi come misure valide ed affidabili della modalità di nutrizione e della qualità di vita legata alla salute (HRQOL). In secondo luogo, il decorso dei problemi sociali al pasto nei primi due anni dal trattamento (chemio)radioterapico è stato indagato in 361 persone con tumore del distretto testa-collo, risultando associato a HRQOL e sintomi deglutitori misurati al baseline, allo stato nutrizionale misurato al baseline e al follow-up di 6 mesi, oltre a sede del tumore, età, sintomi depressivi, forza muscolare e problemi uditivi. In uno studio trasversale condotto su 57 persone con disfagia orofaringea cronica in conseguenza di tumore del distretto testa-collo e malattie neurodegenerative, la consumazione del pasto è risultata associata alla funzione deglutitoria misurata strumentalmente, allo stato nutrizionale e alla HRQOL dei pazienti. Inoltre, è stata evidenziata l’indipendenza del benessere dagli indicatori clinici riportati dai pazienti e l’interdipendenza della dimensione psicosociale di pazienti e caregiver informali. Infine, sono stati indagati i problemi, i bisogni e le risorse di cura percepiti dalle persone con disfagia orofaringea cronica e dai loro caregiver informali. Una scoping review della letteratura sui bisogni di cura ha evidenziato la loro sfaccettata natura e la penuria di studi sull’argomento; i bisogni di cura oltrepassavano il dominio fisico e pratico per includere le dimensioni sociale, di informazione e psicologica. L’indagine qualitativa di problemi, bisogni e risorse di cura in 25 pazienti e 18 caregiver informali italiani ha condotto a risultati sovrapponibili. Oltre agli aspetti negativi, strategie di coping, capacità personali, e supporto sociale e dei servizi sanitari sono stati descritti tra le risorse utilizzate per fronteggiare la disfagia orofaringea cronica. I problemi, bisogni e risorse di cura percepiti erano associati a HRQOL e salute mentale. L’elaborato si chiude con la discussione delle implicazioni per la pratica clinica e dei possibili sviluppi di ricerca futura.
CHRONIC OROPHARYNGEAL DYSPHAGIA: NUTRITIONAL AND PSYCHOSOCIAL IMPLICATIONS / A. Ninfa ; tutor: A. Delle Fave, A. Schindler ; coordinatore: L. Pinotti. Dipartimento di Fisiopatologia Medico-Chirurgica e dei Trapianti, 2023 Apr 19. 35. ciclo, Anno Accademico 2022.
CHRONIC OROPHARYNGEAL DYSPHAGIA: NUTRITIONAL AND PSYCHOSOCIAL IMPLICATIONS
A. Ninfa
2023
Abstract
The PhD dissertation focuses on chronic oropharyngeal dysphagia (OD) in individuals with head and neck cancer and neurodegenerative diseases. The primary aim of the PhD was to investigate the impact of chronic oropharyngeal dysphagia on nutritional status and psychosocial dimensions as perceived by patients and informal caregivers. Preliminarily, the Functional Oral Intake Scale and the Dysphagia Handicap Index were validated into Italian and proved reliable and valid measures to assess feeding modality and Health-Related Quality of Life (HRQOL). Secondly, the 2-years course of social eating problems was investigated in 361 individuals with head and neck cancer after primary (chemo)radiotherapy and resulted associated with swallowing-related quality of life and symptoms measured at baseline and with nutritional status measured at baseline and at 6- month follow-up, besides tumour site, age, depressive symptoms, muscle strength, and hearing problems. A cross-sectional study on 57 individuals with chronic oropharyngeal dysphagia in consequence of head and neck cancer or neurodegenerative diseases and 37 informal caregivers found meal consumption patterns associated with instrumentally assessed swallowing function, nutritional status, and patients’ HRQOL. Besides, it highlighted the independence of well-being from patients’ clinical outcomes and the interdependence of patients’ and informal caregivers’ psychosocial dimensions. Finally, the problems, care needs and resources perceived by patients with chronic oropharyngeal dysphagia and their informal caregivers were addressed. A scoping review on care needs spotlighted their multifaceted nature and the dearth of research on the topic; care needs went beyond the physical and practical domains and included social, informational, and psychological issues. The qualitative investigation of problems, care needs and resources in 25 Italian patients and 18 informal caregivers yielded similar results. Besides negative aspects, coping strategies, personal capabilities, and social and healthcare support were described among resources to manage chronic oropharyngeal dysphagia. Perceived problems, care needs and resources were associated with quality of life, and mental health. The dissertation closes with the discussion of clinical implications of the studies and future research directions.File | Dimensione | Formato | |
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