A review of quality of life themes in Duchenne muscular dystrophy for patients and carers

Uttley, Lesley; Carlton, Jill; Woods, Helen Buckley; Brazier, John

doi:10.1186/s12955-018-1062-0

Health and Quality of Life Outcomes

Table 6 Themes and Trends Identified Under the Physical, Psychological, Social, Well-being and Other Domains for Carers

From: A review of quality of life themes in Duchenne muscular dystrophy for patients and carers

Carer: Physical Functioning Themes
General Physical QoL	Correlates with burden [8, 18, 45, 60]
Sleep	Poor quality of sleep correlates with hormonal changes related to stress [61]
Sleep	Poor quality of sleep correlates with sexual dysfunction [61]
Carer: Psychological Themes
Happiness	Indicate similar levels of happiness to the general population [36]
Depression	PARENT: Correlated with annual household cost burden and hours of leisure time devoted to informal care per week [20] High number of relatives report feelings of depression [45]
	Patient’s loss of ambulation reported as most emotionally difficult time for parents [62]
	Parents report feelings of loss about child’s condition [18, 45]
Anxiety	Correlated with annual household cost burden and hours of leisure time devoted to informal care per week [20]
	No difference between anxiety levels of patient mother versus controls [17]
	High number of relatives report feeling worry about future of other family members [45]
	Higher anxiety correlated with less active coping style [36]
	Parents prioritised the worries about affected children and their care before worries regarding themselves [30]
Coping	Psychological adaptation to DMD predicted by resilience [63]
	Parents felt unable to bear the situation longer compared to parents of Becker MD [18]
	Active coping style correlates with lower caregiver burden [36]
	Emotional coping was most disrupted around the time of loss of ambulation [62]
	Coping strategies such as positive reinterpretation and religion correlate with understanding of the illness [33]
	Social support an important coping strategy [33]
Communication	Difficulties communicating about the condition with affected sons [33]
Carer: Social Themes
Participation	Constraints in leisure activities and neglect of hobbies frequently mentioned concern from parents [18]
Participation	Perception of stigma in a public setting [18]
Friends	Psychological burden higher in those with lower social contacts and support from friends/relatives in emergencies [18]
Relationships	Psychological burden higher for parents without a cohabiting partner [45]
Relationships	Parents report interpersonal issues or problems in family functioning [33]
Carer: Well-Being Themes
General Well-Being	Caregiving described not only as a burden but as an important, rewarding activity [18, 33, 36]
General Well-Being	Caregiver well-being rated as moderate [33]
Carer: Other Themes
Accessibility/ WheelcHair use	Patient’s transition to wheelchair reported as most emotionally difficult time [62]
Treatment Related/	Parental concern about getting right treatment for child and missing out on new treatments [30]
Family resources	Family income restricts abilities to care for son [20, 30, 33, 45]
Family resources	Higher family income correlates with better HRQoL [19, 20, 36]
Carer Burden	Higher perceived caregiver burden correlated with worse functional status in the child [18, 44, 45, 63]
	Higher psychological burden in those who did not live with a partner [45, 64]
	Practical burden correlates with daily time in taking care of the patient [33, 45]
	Higher burden in relatives of DMD patients compared with LGMD and BMD [45]
	High number of relatives report feeling guilt for having transmitted the illness to their children [45]
	Burden correlates with duration of illness [18, 62, 65]
	Burden higher among those with fewer social contacts and lower social support in emergencies [18, 33]
	Parent concerns about quality of care their sons received and problems with physical distance if/ when their sons leaves home [36]
	Relates to time caring for children not functional dependence [46]
	Carer age has no correlations with other factors relevant to burden [62]
Impact on Wider Family	DMD parents are significantly different to Becker MD parents for feelings of stigma and neglect of hobbies [18]
	Parents believed MD has a negative influence on the psychological well-being, and social life of unaffected children [18]
	Difficulties among healthy siblings reported as higher by parents who were older, had higher burden and lower social contacts [18]
	Support from own social contacts relied upon in event of carer illness [45]
	Substantial differences between DMD and BMD caregivers ability for night waking; neglect of hobbies; work/household difficulties; taking holidays and financial difficulties [18]
	Substantial number of parents believed patient’s condition negatively influenced psychological well-being of unaffected children [18]
	Fathers reported lower levels of satisfaction with the family relationship than mothers [7]
	Some parents reported interpersonal issues of problems in family functioning [33]
	Substance use reported to be higher among male caregivers [33]
Carer: Physical Functioning Themes
General Physical QoL	Correlates with burden [19, 44, 62, 70]
Sleep	Poor quality of sleep correlates with hormonal changes related to stress [66]
Sleep	Poor quality of sleep correlates with sexual dysfunction [66]
Carer: Psychological Themes
Happiness	Indicate similar levels of happiness to the general population [33]
Depression	PARENT: Correlated with annual household cost burden and hours of leisure time devoted to informal care per week [32] High number of relatives report feelings of depression [44]
	Patient’s loss of ambulation reported as most emotionally difficult time for parents [62]
	Parents report feelings of loss about child’s condition [19, 44]
Anxiety	Correlated with annual household cost burden and hours of leisure time devoted to informal care per week [32]
	No difference between anxiety levels of patient mother versus controls [46]
	High number of relatives report feeling worry about future of other family members [44]
	Higher anxiety correlated with less active coping style [33]
	Parents prioritised the worries about affected children and their care before worries regarding themselves [26]
Coping	Psychological adaptation to DMD predicted by resilience [67]
	Parents felt unable to bear the situation longer compared to parents of Becker MD [19]
	Active coping style correlates with lower caregiver burden [33]
	Emotional coping was most disrupted around the time of loss of ambulation [62]
	Coping strategies such as positive reinterpretation and religion correlate with understanding of the illness [29]
	Social support an important coping strategy [29]
Communication	Difficulties communicating about the condition with affected sons [29]
Carer: Social Themes
Participation	Constraints in leisure activities and neglect of hobbies frequently mentioned concern from parents [19]
Participation	Perception of stigma in a public setting [19]
Friends	Psychological burden higher in those with lower social contacts and support from friends/relatives in emergencies [19]
Relationships	Psychological burden higher for parents without a cohabiting partner [44]
Relationships	Parents report interpersonal issues or problems in family functioning [29]
Carer: Well-Being Themes
General Well-Being	Caregiving described not only as a burden but as an important, rewarding activity [19, 29, 33]
General Well-Being	Caregiver well-being rated as moderate [29]
Carer: Other Themes
Accessibility/ Wheelchair Use	Patient’s transition to wheelchair reported as most emotionally difficult time [62]
Treatment Related/	Parental concern about getting right treatment for child and missing out on new treatments [26]
Family Resources	Family income restricts abilities to care for son [26, 29, 32, 44]
Family Resources	Higher family income correlates with better HRQoL [32, 33, 41]
Carer Burden	Higher perceived caregiver burden correlated with worse functional status in the child [19, 43, 44, 67]
	Higher psychological burden in those who did not live with a partner [44, 61]
	Practical burden correlates with daily time in taking care of the patient [29, 44]
	Higher burden in relatives of DMD patients compared with LGMD and BMD [44]
	High number of relatives report feeling guilt for having transmitted the illness to their children [44]
	Burden correlates with duration of illness [19, 62, 65]
	Burden higher among those with fewer social contacts and lower social support in emergencies [19, 29]
	Parent concerns about quality of care their sons received and problems with physical distance if/ when their sons leaves home [33]
	Relates to time caring for children not functional dependence [45]
	Carer age has no correlations with other factors relevant to burden [62]
Impact on Wider Family	DMD parents are significantly different to Becker MD parents for feelings of stigma and neglect of hobbies [19]
	Parents believed MD has a negative influence on the psychological well-being, and social life of unaffected children [19]
	Difficulties among healthy siblings reported as higher by parents who were older, had higher burden and lower social contacts [19]
	Support from own social contacts relied upon in event of carer illness [44]
	Substantial differences between DMD and BMD caregivers ability for night waking; neglect of hobbies; work/household difficulties; taking holidays and financial difficulties [19]
	Substantial number of parents believed patient’s condition negatively influenced psychological well-being of unaffected children [19]
	Fathers reported lower levels of satisfaction with the family relationship than mothers [7]
	Some parents reported interpersonal issues of problems in family functioning [29]
	Substance use reported to be higher among male caregivers [29]

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ISSN: 1477-7525

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