Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life

Objective: Structured education programs have been shown to improve somatic outcome and health-related quality of life (HRQOL) in a variety of chronic childhood diseases. Similar data are scarce in paediatric liver transplantation (pLTx). The purpose of this study was to examine the relationship of parental disease-specific knowledge and psychosocial disease outcome in patients after pLTx. Methods: Parents of 113 children (chronic liver disease n = 25, after pLTx n = 88) completed the transplant module of the HRQOL questionnaire PedsQL, the “Ulm quality of life inventory for parents of children with chronic diseases” ULQUI, and a tailor-made questionnaire to test disease-specific knowledge. Results: Parental knowledge was highest on the topic of “liver transplantation” and lowest in “basic background knowledge” (76% and 56% correct answers respectively). Knowledge performance was only marginally associated with HRQOL scores, with better knowledge being related to worse HRQOL outcomes. In contrast, self-estimation of knowledge performance showed significant positive correlations with both PedsQL and ULQUI results. Conclusion: Patient HRQOL and parental emotional wellbeing after pLTx are associated with positive self-estimation of parental disease-specific knowledge. Objective disease-specific knowledge has little impact on HRQOL. Parental education programs need to overcome language barriers and address self-efficacy in order to improve HRQOL after pLTx.

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Assessment of disease specific knowledge and health-related quality of life among United States military veterans with inflammatory bowel disease

World Journal of Gastroenterology ◽

10.3748/wjg.v21.i19.6001 ◽

2015 ◽

Vol 21 (19) ◽

pp. 6001-6007 ◽

Cited By ~ 8

Author(s):

Jason K Hou ◽

Joshua A Turkeltaub ◽

Thomas R McCarty III ◽

Hashem B El-Serag

Keyword(s):

Quality Of Life ◽

Military Veterans ◽

United States Military ◽

Health Related Quality ◽

Specific Knowledge ◽

Related Quality ◽

Health Related ◽

Inflammatory Bowel ◽

Disease Specific

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Explanatory Factors for Disease-Specific Health-Related Quality of Life in Women with Anorexia Nervosa

Journal of Clinical Medicine ◽

10.3390/jcm10081592 ◽

2021 ◽

Vol 10 (8) ◽

pp. 1592

Author(s):

Laura Al-Dakhiel Winkler ◽

Claire Gudex ◽

Mia Beck Lichtenstein ◽

Michael Ejnar Røder ◽

Carol E. Adair ◽

...

Keyword(s):

Quality Of Life ◽

Eating Disorder ◽

Normal Weight ◽

Health Related Quality ◽

Explanatory Factors ◽

Related Quality ◽

Health Related ◽

Disease Specific ◽

Specific Health

A better understanding of explanatory factors for disease-specific health-related quality of life (HRQoL) in anorexia nervosa (AN) could help direct treatment providers to aspects of the most relevance for patient wellbeing and recovery. We aimed to investigate whether factors associated with HRQoL are the same for women with AN and normal-weight controls. The participants in this study were women with AN recruited from specialized eating disorder centers in Denmark and healthy, normal-weight controls invited via online social media. Participants completed online questionnaires on medical history, disease-specific HRQoL (Eating Disorders Quality of Life Scale, EDQLS) and generic HRQoL (SF-36), eating disorder symptomatology, depression, psychological wellbeing, and work and social adjustment. Questionnaires were fully completed by 211 women with AN (median age 21.7 years) and 199 controls (median age 23.9 years). Women with AN had poorer scores on all measures, i.e., worse HRQoL, psychological health, and work/social functioning. Eating disorder symptomatology affected EDQLS score in both groups, but poorer HRQoL in women with AN was also significantly associated with worse scores on bulimia, maturity fears, depression, vitality, and with older age. The factors investigated together explained 79% of the variance in EDQLS score. Management of disordered self-assessment and thought processes may be of particular importance to women with AN. Greater emphasis on these aspects alongside weight gain could enhance patient–clinician alliance and contribute to better treatment outcomes.

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Randomized controlled study of the impact of a participatory patient care plan among primary care patients with common chronic diseases: a one-year follow-up study

BMC Health Services Research ◽

10.1186/s12913-021-06716-6 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Nina Tusa ◽

Hannu Kautiainen ◽

Pia Elfving ◽

Sanna Sinikallio ◽

Pekka Mäntyselkä

Keyword(s):

Quality Of Life ◽

Patient Care ◽

Usual Care ◽

Care Plan ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Disease Specific

Abstract Backround Chronic diseases and multimorbidity are common in the ageing population and affect the health related quality of life. Health care resources are limited and the continuity of care has to be assured. Therefore it is essential to find demonstrable tools for best treatment practices for patients with chronic diseases. Our aim was to study the influence of a participatory patient care plan on the health-related quality of life and disease specific outcomes related to diabetes, ischemic heart disease and hypertension. Methods The data of the present study were based on the Participatory Patient Care Planning in Primary Care. A total of 605 patients were recruited in the Siilinjärvi Health Center in the years 2017–2018 from those patients who were followed up due to the treatment of hypertension, ischemic heart disease or diabetes. Patients were randomized into usual care and intervention groups. The intervention consisted of a participatory patient care plan, which was formulated in collaboration with the patient and the nurse and the physician during the first health care visit. Health-related quality of life with the 15D instrument and the disease-specific outcomes of body mass index (BMI), low density lipoprotein cholesterol (LDL-C), hemoglobin A1c (HbA1C) and blood pressure were assessed at the baseline and after a one-year follow-up. Results A total of 587 patients with a mean age of 69 years were followed for 12 months. In the intervention group there were 289 patients (54% women) and in the usual care group there were 298 patients (50% women). During the follow-up there were no significant changes between the groups in health-related quality and disease-specific outcomes. Conclusions During the 12-month follow-up, no significant differences between the intervention and the usual care groups were detected, as the intervention and the usual care groups were already in good therapeutic equilibrium at the baseline. Trial registration ClinicalTrials.gov Identifier: NCT02992431. Registered 14/12/2016

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