The impact on the quality of life of patients and family members of patients with chronic conditions

Clare-Kleinbussink, Chanta'l ORCID: https://orcid.org/0000-0002-8970-5976 2024. The impact on the quality of life of patients and family members of patients with chronic conditions. MD Thesis, Cardiff University. Item availability restricted.

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Abstract

Chronic conditions (‘dermatological’ (DC) or ‘other’ (OCC)) can impact quality of life (QoL) of patients and family members. Understanding this is vital when considering the care of patients by family members. This study aims to explore the impact on the QoL of patients with chronic conditions and of their family members. Utilising a cross-sectional convenience approach, data was gathered from 436 participants, (DC n=178, OCC n=258) patients and family members, in New Providence, The Bahamas and in Cardiff, Wales. The DC subjects in New Providence and Cardiff were compared, and in New Providence the DC and OCC subjects were compared. Six validated QoL questionnaires were used to measure the impact on QoL of both groups: the Dermatology Life Quality Index(DLQI), the Children’s Dermatology Life Quality Index(CDLQI), the Family Dermatology Life Quality Index(FDLQI), the Family Reported Outcome Measure(FROM-16), the World Health Organisation Quality of Life(WHOQoL-BREF) and the generic health-related QoL children’s questionnaire KINDL-r. The New Providence group completed paper questionnaires, whereas the Cardiff group completed an online questionnaire. All six questionnaires were used in the New Providence group but only the DLQI, FDLQI and FROM-16 in the Cardiff group. The New Providence DC group reported lower total mean impact scores on QoL(DLQI=7.4, FDLQI=3.0, FROM-16=3.5,n=68) than the Cardiff DC group (DLQI=13.8, FDLQI=7.7, FROM-16=8.8,n=88). The New Providence DC family members reported lower total impact scores using FROM-16(mean=3.5,n=45) than the OCC family members (FROM-16 mean=6.3,n=129). The New Providence patient group also included children. Paediatric DC patients mean CDLQI score=7 (n=11) and for the children of the OCC group mean KINDL-r=74.5 (n=4). This study has used a new approach to measuring the impact on QoL in New Providence and has shed light on the QoL impact of two different geographically viii located groups (New Providence and Cardiff). The lessons gained from this study could help change and improve the way in which clinicians manage patients and their family members. In a routine visit to a clinician at a dermatology or other chronic condition clinic, QoL tools could be made available to the patient and their family member before or during the consultation. Once the clinician has been informed by reviewing the completed questionnaires, the clinician should be able to discuss with the family unit the best management strategy for a holistic patient-family member centered care approach, supporting not only the patient but also the wider family. The next research steps, that would build on the presented work, should include a study to measure the benefits to patients and family members of using FROM-16 in routine work. Such a study would need to use appropriate ways to measure benefits, including possible other quality of life measures. It could be structured as a comparative study, randomly allocating patient consultations to use or not to use FROM-16. It would be useful to carry out a subsequent qualitative study, interviewing clinicians who had used FROM-16 in their routine work, to understand clinician attitudes and practical problems encountered when using such measures. As a FROM-16 score threshold of above 16 indicates a major impact on QoL of family members, a further study could evaluate the benefit arising from targeting only those family members above this threshold with additional support.

Item Type:	Thesis (MD)
Date Type:	Completion
Status:	Unpublished
Schools:	Medicine
Date of First Compliant Deposit:	9 August 2024
Last Modified:	09 Aug 2024 10:14
URI:	https://orca.cardiff.ac.uk/id/eprint/171263

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