Emergence and evolution of social self-management of Parkinson’s disease: study protocol for a 3-year prospective cohort study

Table 2 Summary of assessments

Assessment	ICF component
In-person full interview
Montreal Cognitive Assessment (MoCA)	B
Geriatric Depression Scale (GDS)	B
Activity Card Sort (ACS)	A
Qualitative self-management interview	A, B, E
Social network items	E
Chronic Illness Resource Survey (modified) (CIRS)	E
Home visit assessment¹	E
Social Isolation domain, Nottingham Health Profile (NHP)	B, E
Positive Social Interaction items, Medical Outcome Study: Social Support Survey (MOS)	B, E
Stigma Scale for Chronic Illness (SSCI)	B, E
Version 2 of 12 item form of SF-36 (SF-12)	A, B
39 item Parkinson’s Disease Questionnaire² (PDQ-39)	A, B, E
8 item form of PDQ-39³ (PDQ-8)	A, B, E
Movement Disorder Society Unified Parkinson’s Disease Rating Scales⁴ (MDS-UPDRS)	B
Telephone interview
Short qualitative management interview	A, B, E
SF-12	A, B
PDQ-8³	A, B, E

Notes. All assessments are administered to both participants, except PDQ-39, PDQ-8 and MDS-UPDRS, which are administered only to the participant with PD. Unless otherwise indicated in footnotes, all in-person full interview assessments are administered at baseline and six months thereafter. All telephone assessments are administered at month 3 and every 6 months thereafter (between full interview assessments). Abbreviations: PD = Parkinson’s disease; ICF = International Classification of Functioning, Disability & Health, A = Activities & Participation, B = Body function, E = Environment; MOS = Medical Outcomes Study.
¹The modified CIRS is the primary assessment for the home visit, along with an assessment of environmental barriers and facilitators of participation. Administered at month 18 only.
²Administered at baseline, at month 6 and every year thereafter.
³Administered when PDQ-39 not administered: at year 1 and every year thereafter.
⁴Administered at year 1 and every year thereafter.

ISSN: 1471-2377