Effects of Parkinson’s on employment, cost of care, and quality of life of people with condition and family caregivers in the UK: a systematic literature review

Figures & data

Figure 1 The PRISMA flowchart of literature review selection process.

Note: Adapted from Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group. Preferred reporting Items for systematic review and meta-analyses: the PRISMA Statement. PLoS Med. 2009;6(6): e1000097.⁶⁵

Table 1 UK Studies on Parkinson’s effects on quality of life of PwP

Author: Year published	Theme and focus	Design/sample size	Instruments
Politis et al: 2010^Citation10	Daily activity – most severe health complaints by Parkinson’s progression	Cross-sectional: 130 PwP	UK Parkinson’s Disease Society Brain Bank clinical diagnostic criteria. Authors own symptoms rating scale
Rahman et al: 2008^Citation12	Daily activity and management of symptoms/complaints by Parkinson’s progression	Cross-sectional: 265 PwP	H&Y Stage scale, PDQ-39, PD symptoms checklist, Mobility checklist, Beck depression inventory (BDI), and Beck anxiety inventory
Rochow, Blackwell, Brown: 2005^Citation13	QoL differentials: attending movement disorder clinic vs general clinic	Cross-sectional: 42 PwP	PDQ-39
Leroi et al: 2011^Citation14	Early stage – apathy and impulse controls	Cross-sectional: 99 PwP	Unified Parkinson’s Disease Scale, Schwab-England Scale for Disability, PDQ-8
Findley et al: 2002^Citation15	QoL differential factors after controlling for disease severity and medication	Cross-sectional: UK, Italy, Spain, USA, Canada, Japan. N=1,910 interviews, 203 clinicians, 1,020 PwP	PDQ-39, H&Y Stage scale, Becks Depression inventory, Mini-Mental State Examination Scale (MMSE), WHO-Disability Adjustment Schedule-Short
Duncan et al: 2014^Citation16	Non-motor symptoms at Early stage	Epidemiological: 58 PwP and 99 healthy controls	Non-motor symptoms 30 items, MMSE & Montreal Cognitive Assessment (MoCA), Geriatric Depression Scale-15, Pittsburgh Sleep Quality Index, PDQ-39
Simpson, Lekwuwa, Crawford: 2014^Citation17	Differentials and predictors	Cross-sectional: 81 PwP	Unified Parkinson’s Disease Rating scale, Parkinson’s Disease Activities of Daily Living Scale, MMSE, Depression Anxiety and Stress Scales (DASS), Life Orientation Test-Revised (LOT-R), Rosenberg Self-Esteem Scale (RSE), PDQ-39
Shearer et al: 2012^Citation19	Motor and non-motor symptoms by Parkinson’s progression	Cross-sectional: 162 PwP	H&Y Stage scale, MMSE, Unified Parkinson’s Disease Scale, EQ-5D
Benharoch, Wiseman: 2004^Citation20	Positive impact by participation in different daily activities	Qualitative: seven in-depth interviews with PwP	Thematic/topic guide for face-to-face interviews
Simpson et al: 2006^Citation21	Wellbeing and social support	Cross-sectional: 34 PwP	Positive & Negative Affect Schedule, Depression Anxiety & Stress Scale, PDQ-39
Charlton, Barrow: 2002^Citation22	Physical and mental functioning, independence and self-identity	Qualitative: eight in-depth interviews with PwP	Semi-structured interviews, thematic analysis
Higginson et al: 2012^Citation24	QoL in Late stage & Palliative care needs	Longitudinal: 82 PwP	PDQ-8, Hospital Anxiety and Depression Scale (HADS)-14, EQ-5D, Palliative care Outcome Scale (POS), Palliative care Outcome Scale for Symptoms (POS-PP)
Knipe et al: 2011^Citation26	Differentials by young vs older	Cross-sectional: 426 PwP	BDI, MMSE, PDQ-39, Unified Parkinson’s Disease Rating Scale
Lawson et al: 2014^Citation27	Early stage cognitive impairment	Epidemiological: 219 PwP and 99 healthy controls	MMSE, MoCA, PDQ-39, Unified Parkinson’s Disease Scale
Cubi-Molla, de Vires, Devlin: 2014^Citation28	QoL and Wellbeing differentials	Cross-sectional: 199 PwP	EQ-5D, Subjective Wellbeing standard questions, Author’s own questionnaire
Murdock, Cousins, Kernohan: 2014^Citation29	Parkinson’s progression & QoL	Qualitative: ten in-depth interviews with PwP	Phenomenological approach to semi-structured interviews, thematic analysis

Notes: PDQ-39¹¹ (a more comprehensive version) and PDQ-8²⁵ are both self-completion patient related outcome scales designed to address and quantify  aspects of functioning and well-being for those affected by Parkinson's. The 39 questions are asked to reflect on eight domains of mobility, activities of daily living, emotional well-being, stigma, social support, cognition, communications, and bodily discomfort. The PDQ-8 is a short version and only ask one question each from eight domains.

Abbreviations: PwP, people with Parkinson's; PD, Parkinson's Disease; PDQ-39, Parkinson’s Disease QoL Questionnaire; QoL, quality of life; H&Y, Hoehn and Yahr;  PDQ-8, Parkinson's Disease QoL Questionnaire Short Form; EQ-5D, EuorQol- 5 Dimensions. 

Table 4 UK Studies on health care and societal cost related to Parkinson’s

Author: Year published	Theme and focus	Design/sample size	Instruments
McCrone, Allcock, Burn: 2007^Citation46	Health care and societal costs by severity	Longitudinal: 174 PwP	H&Y Stage Scale, UPDRS, Multidimensional Fatigue Inventory, PDQ-39, MMSE, Northwestern University Disability Scale, Resource Use questionnaire
Findley et al: 2011^Citation47	Health care costs: home vs residential care	Cross-sectional: 302 PwP by severity	Adelphi Disease Specific Programme Survey, H&Y Stage Scale, Resource Use questionnaire
Findley et al: 2007^Citation48	Economic and health care impact	Cross-sectional: 432 PwP	H&Y Stage Scale, PDQ-39, EQ-5D, Resource Use questionnaire
Low et al: 2015^Citation49	Hospitalization costs and incidence	Routine Hospital Episode Statistics data for 4 years	Hospitalization records
Xin et al: 2014^Citation50	Hospitalization costs, incidence by Parkinson’s progression	RCT: 2,074 PwP, followed over 10 years	Hospitalization records, H&Y stage scale
Hobson, Roberts, Meara: 2003^Citation51	Specialist Nurse service cost	Routine Audit: Specialist nurses visits to 321 PwP over 12 months	Routine Hospital service and audit records
Jarman et al: 2002;^Citation52 Hurwitz et al: 2005^Citation53	Specialist Nurse Intervention on health care costs and QoL	RCT: 1,859 PwP	PDQ-39, EQ-5D, Columbia Rating Scale (Stand-up test), Health Services/Resource Use questionnaire
Walker, Sweeney, Gray: 2011^Citation54	Cost of Care services for rural PwP	Cross-sectional: 75 PwP	Semi-structured interview, UPDRS, PDQ-39, MMSE, HADS
Findley et al: 2003^Citation55	Health care costs by Parkinson’s progression	Cross-sectional: 444 PwP	GP Records, Interview Questionnaire, CSI, MMSE, H&Y Stage scale, PDQ-39, EQ-5D, Resource Use Questionnaire

Abbreviations: PwP, people with Parkinson's; PDQ-39, Parkinson’s Disease QoL Questionnaire; QoL, quality of life; H&Y, Hoehn and Yahr; MMSE, Mini-Mental State Examination Scale; UPDRS, Unified Parkinson’s Disease Rating Scale; HADS, Hospital Anxiety and Depression Scale; GP, general practitioner; CSI, Carer Strain Index; RCT, randomized controlled trial.

Table 2 UK studies on Parkinson’s effects on quality of life of caregivers and family members

Author: Year published	Theme and focus	Design/sample size	Instruments
Davey et al: 2004^Citation32	Fall management by carers	Qualitative: 14 in-depth interviews with carers	Semi-structured interviews, thematic analysis
Kudlicka, Clare, Hindle: 2014^Citation33	PwP and carers by Parkinson’s severity	Cross-sectional: 65 PwP, 50 carers	Life Satisfaction Scale, PDQ-39, Caregiver Burden Inventory, HADS – Depression & Anxiety, ACE-R for cognitive, Executive Functions Scale
Peters et al: 2011^Citation34	Health and wellbeing differentials of PwP and Carers	Cross-sectional: 901 PwP, 734 carers	SF-12, Carer Strain Index (CSI), PDQ-39
Peters et al: 2013^Citation35	QoL and health and social services experience of carers of Parkinson’s vs other neurological conditions	Cross-sectional: 1,910 carers (434-motor neuron disease, 721-multiple sclerosis, and 755-Parkinson’s)	SF-12, CSI, Author’s own questionnaire
Drutyte et al: 2014^Citation36	Stress, employment and financial impact on carers	Cross-sectional: 1,881 carers	Parkinson’s UK Members’ Survey questionnaire
Morley et al: 2012^Citation37	QoL of PwP and carers by Parkinson’s severity	Cross-sectional: 238 PwP & carer couples	PDQ-Carer-29 Items, PDQ-39
Schrag et al: 2006^Citation38	Stress on carers	Cross-sectional: 123 carers	HADS – Depression & Anxiety
Schrag et al: 2004^Citation39	QoL of Offspring	Cross-sectional: 89 offspring	QoL in Epilepsy Inventory for Adolescents − 48 items, Rosenberg Self-Esteem Scale – 10 items, Birleson Depression Self Rating Scale (BDSRS) – 18 items, Parental Illness Impact Scale (Parkinson’s disease), EQ-5D
Morley et al: 2011^Citation40	QoL of Offspring	Cross-sectional: 143 offspring	Parental Illness Impact Scale-Revised (PIIS-R)-51 items, BDSRS-18 items, BDI-21 items

Notes: The PDQ-Carer-29 is another self-completion questionnaire for the carer, developed by the same team who published the PDQ-39 and PDQ-8 instruments. The four domains the carer is asked to answer relate to: Social and personal activities (12 items), Anxiety and depression (6 items), Self-care (5 items), and Stress (6 items).

Abbreviations: PwP, people with Parkinson's; PDQ-39, Parkinson’s Disease QoL Questionnaire; QoL, quality of life; HADS, Hospital Anxiety and Depression Scale; BDI, Beck depression inventory; ACE-R, Revised Version of Addenbrook's Cognitive Examination that assesses attention, memory, verbal fluency, language and visuospatial abilities.

Table 3 UK Studies on changes in employment and living conditions due to Parkinson’s

Author: Year published	Theme and focus	Design/sample size	Instruments
Schrag, Banks: 2006^Citation43	Societal costs – loss of employment	Quantitative: two datasets: 151 and 308 PwP	Authors own questionnaire
Clarke, Zobkiw, Gullaksen: 1995^Citation44	Employment loss and financial burden	Cross-sectional: 72 PwP	Unified Parkinson’s Disease Rating Scale, Author’s own questionnaire
Drutyte et al: 2014^Citation36	Stress, employment, and financial impact on carers	Cross-sectional: 1,881 carers	Parkinson’s UK Members’ Survey questionnaire
Mclaughlin et al: 2011^Citation45	Financial implications and QoL of carers	Qualitative: 26 carer’s experience	Semi-structured interviews, thematic analysis

Abbreviations: PwP, people with Parkinson's; QoL, quality of life.

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