Study population
Of the 15 general practices approached, three did not respond to the request for participation and three were not able to select patients who met the inclusion criteria. The remaining nine general practices selected 41 suitable patients, of whom 35 were willing to be approached by the researcher. Nineteen of these patients decided not to participate because of the burden PD gave them, the expected burden of making videos every fortnight or because of other personal circumstances.
Sixteen patients participated in the study: eight during 1 year and eight during half a year. Three patients did not complete the follow-up period: one patient died, one patient withdrew because of the burden of comorbidity and one patient because of difficulties with storytelling to the video camera. The patients’ mean age at the start of the study was 68 years (SD 6.0). Most patients were male (N = 11). Most patients had an H&Y stage between H&Y 1 and H&Y 2.5 at the start of the study; only two patients were in H&Y stage 4 (Table 3).
Table 3.  Characteristics of the participating community-dwelling patients with Parkinson’s disease – including oversight of the experienced changes in care.
Patient Code (A–J)  Sex  Age at start study (years)  Severity of disease at start study: mild–severe (H&Y stage 1–4)  Experienced change(s) in care (each line represents a separate interview and shows the discussed changes in care)  Follow-up period (months)
A  Male  65  1  Modification of PD-related pharmacotherapyDomestic adjustment  12
B  Female  58  1.5  Purchase of a toolChange in unpaid careDomestic adjustment  12
C  Male  59  1.5  Change in unpaid care  12
D  Male  76  2  Modification of PD-related pharmacotherapy (adverse effects)  12
E  Male  63  2  Purchase of a toolDomestic adjustment  12
F  Male  67  1.5  Acute admission to hospital, modification of PD-related pharmacotherapy  12a
G  Male  65  1.5  Involvement of a speech therapistConsultation of GP, consultation of neurologist, modification of PD-related pharmacotherapy  12
H  Male  79  4  Acute admission to hospital  12a,b
I  Female  75  1  Consultation of GP, planned admission to hospitalConsultation of neurologist, modification of PD-related pharmacotherapy  6
J  Male  73  2  Domestic adjustment, modification of PD-related pharmacotherapyConsultation of neurologist  6
K  Female  70  4  Consultation of GP, consultation of neurologist, modification of PD-related pharmacotherapy  6
L  Male  72  2.5     6a
M  Female  70  1     6
N  Female  64  2.5  Modification of PD-related pharmacotherapy  6
O  Male  65  1.5  Consultation of GP, ENT specialist and neurologist, modification of pharmacotherapy (laxative)  6
P  Male  72  2  Consultation of neurologist, consultation of GP, modification of pharmacotherapy (laxative)  6
a  Did not finish follow-up.
b  Deceased during follow-up. Two participating patients did not experience any changes in care (Table 3). Thirteen patients and one personal caregiver (replacing the patient who had died during the study period) were interviewed about 34 changes in care. Some patients were interviewed more than once because they experienced changes at different moments. The interview with the caregiver served to get insight into the type(s) of change the deceased patient encountered. A total of 21 interviews were conducted, each taking between 60 and 90 min.