Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Name | Class |
|---|---|
| Admiraal de Ruyter Hospital | OTHER |
| Alrijne Hospital | OTHER |
| Amphia Hospital | OTHER |
| St. Antonius Hospital |
Not provided
Not provided
Not provided
The goal of this prospective, observational, multicentre cohort study is to assess the trajectory of the experiences (both positive and negative) and health-related quality of life (HRQOL) of informal caregivers of patients who start home dialysis, and compare these to experiences and HRQOL of informal caregivers of patients who start in-centre hemodialysis. The investigators hypothesise that informal caregivers of home dialysis patients experience more positive experiences, but also more negative experiences, and still have better HRQoL, compared with caregivers of in-centre HD patients. Participants will fill in five different validated questionnaires and questions on required support. Participants are asked to fill in the questionnaires after inclusion (i.e., start of dialysis), and at 6 and 12 months after start dialysis.
End-stage kidney disease, the need to start dialysis, and the choice for a home-based treatment or a centre-based treatment does not only have an effect on patients, but also on their informal caregivers like spouses and adult children providing care to the patient. In order to properly inform patients with end-stage kidney disease and their informal caregivers about the start of dialysis therapy and the choice of dialysis modality, it is important to discuss also what the caregiver can expect after the start of dialysis. However, available evidence regarding the course of caregiving experiences after start of dialysis is limited. The aim of this study is to assess the trajectory of the experiences (both positive and negative) and health-related quality of life (HRQoL) of caregivers of patients who start home dialysis, and compare these to experiences and HRQoL of caregivers of patients who start in-centre hemodialysis (HD). The investigators hypothesise that (co-residential) caregivers of home dialysis patients experience more positive experiences, but also more negative experiences, and still have better HRQoL, compared with caregivers of in-centre HD patients.
This study is a prospective, observational, multicentre cohort study which is an extension of the ongoing DOMESTICO study. DOMESTICO is a nationwide study in incident dialysis patients, investigating the effects of home dialysis on HRQoL in relation to clinical outcome and costs, in comparison to in-centre HD. Participants will fill in five different validated questionnaires and questions on required support. Participants are asked to fill in the questionnaires after inclusion (i.e., start of dialysis), and at 6 and 12 months after start dialysis.
Not provided
Not provided
Not provided
Not provided
Not provided
| Measure | Description | Time Frame |
|---|---|---|
| Changes in positive experiences of the caregiver (PES) | Positive Experiences Scale (PES): a Dutch 8-item validates questionnaire | Baseline (start of dialysis), and 6 months and 12 months after start dialysis |
| Measure | Description | Time Frame |
|---|---|---|
| Changes in negative experiences of the caregiver (EDIZ+) | 'Ervaren Druk door Informele Zorg' or Experienced Burden by Informal Care (EDIZ+): a Dutch 15-item validated questionnaire | Baseline (start of dialysis), and 6 months and 12 months after start dialysis |
| Changes in negative experiences of the caregiver (CES-D) |
| Measure | Description | Time Frame |
|---|---|---|
| Required support | Exploratory outcome, assessed by a questionnaire investigating in which domains caregivers would like extra support | Baseline (start of dialysis), and 6 months and 12 months after start dialysis |
Inclusion Criteria:
Not provided
Not provided
Not provided
Informal caregivers of patients who are starting dialysis and are included in the DOMESTICO study
Not provided
| Name | Affiliation | Role |
|---|---|---|
| Brigit C van Jaarsveld, MD, PhD | Amsterdam UMC, location VUmc | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Jessa Hospital | Hasselt | Belgium | ||||
| Noordwest Ziekenhuisgroep |
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| OTHER |
| Canisius-Wilhelmina Hospital | OTHER |
| Catharina Ziekenhuis Eindhoven | OTHER |
| Deventer Ziekenhuis | OTHER |
| Dialysis Center Beverwijk | UNKNOWN |
| Tergooi Hospital | OTHER |
| Diapriva Dialysis Center, Amsterdam | OTHER |
| Elkerliek Hospital | OTHER |
| Flevoziekenhuis | OTHER |
| Gelre Hospitals | OTHER |
| Groene Hart Ziekenhuis | OTHER |
| Haga Hospital | OTHER |
| Isala | OTHER |
| Laurentius Hospital | UNKNOWN |
| Maasstad Hospital | OTHER |
| Maxima Medical Center | OTHER |
| Noordwest Ziekenhuisgroep | OTHER |
| OLVG Oost | UNKNOWN |
| OLVG West | UNKNOWN |
| Radboud University Medical Center | OTHER |
| Reinier de Graaf Groep | OTHER |
| Rijnstate Hospital | OTHER |
| Saxenburgh Group | UNKNOWN |
| Slingeland Hospital | OTHER |
| UMC Utrecht | OTHER |
| VieCuri Medical Centre | OTHER |
| Amsterdam UMC | OTHER |
| Bernhoven Hospital | OTHER |
| ZorgSaam | UNKNOWN |
| Jessa Hospital | OTHER |
Not provided
Not provided
Not provided
Centre for Epidemiologic Studies Depression Scale (CES-D): a 20-item validated questionnaire |
| Baseline (start of dialysis), and 6 months and 12 months after start dialysis |
| Changes in health-related quality of life (HRQOL) (SF-12) | 12-item Short Form (SF-12): validated questionnaire with eight domains | Baseline (start of dialysis), and 6 months and 12 months after start dialysis |
| Changes in health-related quality of life (HRQOL) (EQ5D-5L) | EuroQol-5D-5L (EQ5D-5L): validated questionnaire with five domains | Baseline (start of dialysis), and 6 months and 12 months after start dialysis |
| Alkmaar |
| Netherlands |
| Flevoziekenhuis | Almere Stad | Netherlands |
| Alrijne Hospital | Alphen aan den Rijn | Netherlands |
| Amsterdam UMC | Amsterdam | Netherlands |
| Diapriva Dialysis Center | Amsterdam | Netherlands |
| OLVG Oost | Amsterdam | Netherlands |
| OVLG West | Amsterdam | Netherlands |
| Gelre Hosptials | Apeldoorn | Netherlands |
| Rijnstate Hospital | Arnhem | Netherlands |
| Dialysis Center Beverwijk | Beverwijk | Netherlands |
| Amphia Hospital | Breda | Netherlands |
| Reinier de Graaf Group | Delft | Netherlands |
| Deventer Hospital | Deventer | Netherlands |
| Slingeland Hospital | Doetinchem | Netherlands |
| Catharina Hospital | Eindhoven | Netherlands |
| Admiraal de Ruyter Hospital | Goes | Netherlands |
| Groene Hart Hospital | Gouda | Netherlands |
| Saxenburgh Group | Hardenberg | Netherlands |
| Elkerliek Hospital | Helmond | Netherlands |
| Dialysis Center Tergooi | Hilversum | Netherlands |
| Antonius Hospital | Nieuwegein | Netherlands |
| Canisius-Wilhelmina Hospital | Nijmegen | Netherlands |
| Radboudumc | Nijmegen | Netherlands |
| Laurentius Hospital | Roermond | Netherlands |
| Maasstad Hospital | Rotterdam | Netherlands |
| ZorgSaam | Terneuzen | Netherlands |
| Haga Hospital | The Hague | Netherlands |
| Bernhoven Hospital | Uden | Netherlands |
| UMC Utrecht | Utrecht | Netherlands |
| Maxima Medical Center | Veldhoven | Netherlands |
| VieCuri Medical Center | Venlo | Netherlands |
| Isala Hospital | Zwolle | Netherlands |
| ID | Term |
|---|---|
| D007676 | Kidney Failure, Chronic |
| ID | Term |
|---|---|
| D051436 | Renal Insufficiency, Chronic |
| D051437 | Renal Insufficiency |
| D007674 | Kidney Diseases |
| D014570 | Urologic Diseases |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
| D000091642 | Urogenital Diseases |
| D052801 | Male Urogenital Diseases |
| D002908 | Chronic Disease |
| D020969 | Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
Not provided
Not provided