Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation

Abstract Background This study examined the impact of Duchenne muscular dystrophy (DMD) on family-member caregivers in terms of quality of life, life stress, and indirect costs, as compared to a stratified comparison group of parents of similar-age children without DMD. Methods A web-based survey included DMD caregivers and a nationally representative comparison group of parents of children without DMD stratified by Child Age Group. Outcomes included quality of life, resilience, caregiver impact, stressful life events, financial strain, out-of-pocket expenditures, work productivity and unrealized ambitions. General linear models assessed the main effect of Caregiver Group and the interaction of Caregiver Group with Child-Age-Group, after adjusting for demographic covariates. Results Compared to parents without a DMD child, DMD Caregivers reported better physical health but worse mental health, positive affect/well-being, environmental mastery, difficulty paying bills, and more hours missed from work. Providing caregiving support for DMD teenagers was the most challenging. DMD caregivers curtailed their educational and professional ambitions, and modified their homes to accommodate the disability associated with DMD. Their non-DMD children had to make sacrifices as well. Nonetheless, in resilience and life stress, DMD caregivers were comparable to the comparison group, and showed consistent levels of positive emotions across the age of their DMD child. Conclusion DMD caregivers fared worse on most outcomes and faced more hurdles in work life. They face constraints and hidden costs that impact their health and financial well-being. Caregivers of teenagers with DMD reported higher impact. Nonetheless, parents of DMD children of all ages maintained notable resilience and positivity.

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Health- related quality of life in patients with Duchenne Muscular Dystrophy

Neuropediatrics ◽

10.1055/s-0031-1273950 ◽

2011 ◽

Vol 42 (S 01) ◽

Cited By ~ 1

Author(s):

B Geers ◽

S Elsenbruch ◽

J Schmid ◽

U Schara

Keyword(s):

Quality Of Life ◽

Duchenne Muscular Dystrophy ◽

Muscular Dystrophy ◽

Health Related Quality ◽

Related Quality ◽

Health Related

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Faculty Opinions recommendation of Quality of life, physical disability, and respiratory impairment in Duchenne muscular dystrophy.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.8172.465661 ◽

2006 ◽

Author(s):

Jean-Paul Praud

Keyword(s):

Quality Of Life ◽

Duchenne Muscular Dystrophy ◽

Muscular Dystrophy ◽

Physical Disability ◽

Respiratory Impairment

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Rasch Analysis of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales Administered to Patients With Duchenne Muscular Dystrophy

Value in Health ◽

10.1016/j.jval.2021.05.016 ◽

2021 ◽

Vol 24 (10) ◽

pp. 1490-1498

Author(s):

Erik Landfeldt ◽

Joel Iff ◽

Erik Henricson ◽

V. Vishwanathan ◽

S. Chidambaranathan ◽

...

Keyword(s):

Quality Of Life ◽

Duchenne Muscular Dystrophy ◽

Muscular Dystrophy ◽

Rasch Analysis ◽

Quality Of Life Inventory ◽

Life Inventory

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A.01 The relationship between fatigue and health-related quality of life in a clinical trial population of Duchenne muscular dystrophy patients

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques ◽

10.1017/cjn.2017.65 ◽

2017 ◽

Vol 44 (S2) ◽

pp. S8-S8

Author(s):

Y Wei ◽

B El-Aloul ◽

C Nguyen ◽

E Zapata-Aldana ◽

C Campbell

Keyword(s):

Quality Of Life ◽

Clinical Trial ◽

Duchenne Muscular Dystrophy ◽

Muscular Dystrophy ◽

Parent Report ◽

Health Related Quality ◽

Patient Report ◽

Related Quality ◽

Health Related

Background: Fatigue was recently reported to be the largest contributor to poor health-related quality of life (HRQOL) in paediatric Duchenne muscular dystrophy (DMD). Additional studies are necessary to confirm the generalizability of this finding. Our objective was to explore the longitudinal relationship between fatigue and HRQOL in an additional cohort of DMD patients. Methods: We performed a secondary analysis of data from a clinical trial (NCT00592553), which enrolled patients with nonsense mutation DMD, aged 5–20 years, from 37 sites in 11 countries (N=174). Fatigue and HRQOL were assessed using the PedsQLTM Multidimensional Fatigue Scale and Generic Core Scales, respectively, by patient- and parent-report at baseline and over 48 weeks. Results: Patients reported greater fatigue than healthy controls from published data. There was no significant difference between patient- and parent-reported fatigue. Fatigue was significantly correlated with worse HRQOL at baseline, by patient-report (r=0.70, P<0.001) and parent-report (r=0.70, P<0.001); and at 48 weeks, by patient-report (r=0.79, P<0.001) and parent-report (r=0.74, P<0.001). Change in fatigue was significantly correlated with change in HRQOL over 48 weeks, by patient-report (r=0.64, P<0.001) and parent-report (r=0.67, P<0.001). Conclusions: Fatigue is a major contributor to HRQOL in DMD. The strong association between fatigue and HRQOL corroborates previous studies, and suggests that reducing fatigue may improve HRQOL.

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Psychological well-being, marital adjustment and quality of life after hysterectomy: a comparative study

International Journal of Reproduction Contraception Obstetrics and Gynecology ◽

10.18203/2320-1770.ijrcog20184948 ◽

2018 ◽

Vol 7 (12) ◽

pp. 4960

Author(s):

Kusum Lata Mathur ◽

Manu Sharma ◽

Mohua Mazumdar ◽

Shikha Talati ◽

Siddharth Srivastav

Keyword(s):

Quality Of Life ◽

Marital Adjustment ◽

Comparison Group ◽

Psychiatric Morbidity ◽

Depression Scale ◽

Well Being ◽

Study Groups ◽

Life Questionnaire ◽

Gynecological Surgery

Background: Hysterectomy is the most common major gynecological surgery often performed for benign lesions. Many studies have reported adverse psychosocial outcomes post-hysterectomy. There is a paucity of studies from India addressing psychiatric morbidity after hysterectomy. To evaluate psychological wellbeing, marital adjustment and quality of life in patients undergoing hysterectomy for non-malignant conditions, in comparison with patients undergoing surgery other than hysterectomy.Methods: A cross-sectional study was conducted on 100 consecutive out-patients who underwent hysterectomy for non-malignant indications at least 6 months ago. The comparison group comprised of 50 consecutive out-patients who underwent gynecological surgery other than hysterectomy at least 6 months ago formed the comparison group. The study participants were evaluated on Hospital Anxiety and Depression Scale (HADS), Psychological General Well-being Index (PGWBI), Marital Adjustment Test (MAT) and Women’s Quality of Life Questionnaire (WOMQOL).Results: The indications for hysterectomy were: uterine leiomyoma (69%), uterovaginal prolapse (18%), dysfunctional uterine bleeding (12%), and endometriosis (1%). Abdominal hysterectomy was performed in 92 patients while 8 patients underwent vaginal hysterectomy. There were no significant differences in the study groups on scores of HADS, PGWBI, MAT and WOMQOL (p>0.05). Both the study groups had good marital adjustment and majority reported no depression and anxiety.Conclusions: There is no major psychiatric morbidity, decline in marital adjustment and quality of life after hysterectomy for benign conditions among Indian women. Future research on the ethno-cultural implications and effect of hysterectomy on mental health will be a significant addition to the available evidence in India.

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P.072 Agreement between children and their parents’ ratings of the health-related quality of life of children with Duchenne Muscular Dystrophy

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques ◽

10.1017/cjn.2018.174 ◽

2018 ◽

Vol 45 (s2) ◽

pp. S35-S35

Author(s):

S Brar ◽

C Campbell ◽

E McColl ◽

W Martens ◽

M McDermott ◽

...

Keyword(s):

Quality Of Life ◽

Duchenne Muscular Dystrophy ◽

Muscular Dystrophy ◽

Self Report ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Parent Proxy ◽

Level Of Agreement

Background: When measuring young Duchenne Muscular Dystrophy (DMD) patients’ health-related quality of life (HRQoL), parent-proxy reports are heavily relied on. Therefore, it is imperative that the relationship between parent-proxy and child self-report HRQoL is understood. This study examined the level of agreement between children and their parent-proxy rating of the child’s HRQoL. Methods: We used FOR-DMD clinical trial baseline data. HRQoL, measured using the PedsQL inventory, was reported by 178 parent and child (ages 4 to 7 years) dyads. Intracorrelation coefficients (ICC) measured absolute agreement while paired t-tests determined differences in the average HRQoL ratings between groups. Results: The level of agreement between child and parent-proxy ratings of HRQoL was poor for the generic PedsQL scale (ICC: 0.29) and its subscales; and, similarly low for the neuromuscular disease module (ICC:0.16). On average, parents rated their child’s HRQoL as poorer than the children rated themselves in all scales except for psychosocial and school functioning. Conclusions: Child and parent-proxy HRQoL ratings are discordant in this study sample, as occurs in other chronic pediatric diseases. This should be taken into account when interpreting clinical and research HRQoL findings in this population. Future studies should examine reasons for parents’ perception of poorer HRQoL than that reported by their children.

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