Measurement Instruments Used to Assess Caregiver Burden in Informal Caregivers of Adult Cancer Patients: A Systematic Review
Abstract
1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Eligibility Criteria
2.2.1. Population
2.2.2. Concept and Outcome of Interest
2.2.3. Context
2.3. Information Sources
2.4. Search Strategy
2.5. Selection Process
2.6. Data Collection Process
2.7. Data Items
2.8. Risk of Bias Assessment
2.9. Effect Measures
2.10. Synthesis Methods
2.11. Certainty Assessment
3. Results
3.1. Characteristics of Included Studies
3.2. Instruments Used to Assess Caregiver Burden
3.3. Instruments Specifically Developed for Oncology Caregivers
3.4. Measurement-Related Information Reported Across Studies
3.5. Synthesized Evidence Across Instruments
3.6. Reporting Biases
4. Discussion
Strengths and Limitations
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Public Involvement Statement
Guidelines and Standards Statement
Use of Artificial Intelligence
Conflicts of Interest
References
- Irwin, M.M.; Dudley, W.; Northouse, L.; Berry, D.L.; Mallory, G.A. Oncology nurses’ knowledge, confidence, and practice in addressing caregiver strain and burden. Oncol. Nurs. Forum 2018, 45, 187–196. [Google Scholar] [CrossRef]
- Zuo, Y.; Luo, B.R.; Peng, W.T.; Liu, X.R.; He, Y.L.; Zhang, J.J. Informal caregiver burden and influencing factors in gynaecological oncology patients hospitalized for chemotherapy: A cross-sectional study. J. Int. Med. Res. 2020, 48, 300060520974927. [Google Scholar] [CrossRef]
- Ali, E.; Abraham, Y.; Samuel, T.; Tsega, A.; Aschale, M. Predictors of caregiver burden among primary caregivers of cancer patients at Hawassa oncology center Northern Ethiopia: Institution-based cross-sectional study. BMC Prim. Care 2023, 24, 224. [Google Scholar] [CrossRef]
- Zarit, S.H.; Reever, K.E.; Bach-Peterson, J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist 1980, 20, 649–655. [Google Scholar] [CrossRef]
- Romito, F.; Goldzweig, G.; Cormio, C.; Hagedoorn, M.; Andersen, B.L. Informal caregiving for cancer patients. Cancer 2013, 119, 2160–2169. [Google Scholar] [CrossRef]
- Breuning, M.; Mählmann, S.; Kerek-Bodden, H.; Oettlin, S.; Weis, J. Family caregivers of cancer patients: Burdens and support preferences of partner, parent and adult-child caregivers. Psychooncology 2024, 33, e9310. [Google Scholar] [CrossRef] [PubMed]
- Stenberg, U.; Ruland, C.M.; Miaskowski, C. Review of the literature on the effects of caring for a patient with cancer. Psychooncology 2010, 19, 1013–1025. [Google Scholar] [CrossRef]
- Alsirafy, S.A.; Nagy, R.; Hassan, A.D.; Fawzy, R.; Abdelhafeez, A.A.M.; Husein, M.O.; Almashiakhi, M.A.; Alabdullateef, S.H.; Alghamdi, S.A.; Elyamany, A.M. Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries. BMC Palliat. Care 2021, 20, 163. [Google Scholar] [CrossRef]
- Castilla-Soto, J.; Jiménez-Ternero, A.I.; de-la-Ossa-Sendra, M.J.; Barón-López, F.J.; Contreras-Fernández, E.; Wärnberg, J. Burden and quality of life in caregivers of cancer patients at the beginning of palliative care: CUIDPAL-COSTASOL study. Enferm. Clin. (Engl. Ed.) 2021, 31, 222–226. [Google Scholar] [CrossRef] [PubMed]
- Chang, T.T.; Liang, S.Y.; Rosenberg, J. Burden of family caregivers of patients with oral cancer in home care in Taiwan. Healthcare 2023, 11, 1107. [Google Scholar] [CrossRef] [PubMed]
- Minaya, P.; Baumstarck, K.; Berbis, J.; Goncalves, A.; Barlesi, F.; Michel, G.; Salas, S.; Chinot, O.; Grob, J.-J.; Seitz, J.F.; et al. The CareGiver Oncology Quality of Life questionnaire (CarGOQoL): Development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer. Eur. J. Cancer 2012, 48, 904–911. [Google Scholar] [CrossRef] [PubMed]
- Boele, F.W.; Terhorst, L.; Prince, J.; Donovan, H.S.; Weimer, J.; Lieberman, F.S.; Drappatz, J.; Sherwood, P.R. Psychometric evaluation of the Caregiver Needs Screen in neuro-oncology family caregivers. J. Nurs. Meas. 2019, 27, 162–176. [Google Scholar] [CrossRef] [PubMed]
- Clark, M.M.; Atherton, P.J.; Lapid, M.I.; Rausch, S.M.; Frost, M.H.; Cheville, A.L.; Hanson, J.M.; Garces, Y.I.; Brown, P.D.; Sloan, J.A.; et al. Caregivers of patients with cancer fatigue: A high level of symptom burden. Am. J. Hosp. Palliat. Care 2014, 31, 121–125. [Google Scholar] [CrossRef]
- Cairo Notari, S.; Favez, N.; Notari, L.; Charvoz, L.; Delaloye, J.F. The caregiver burden in male romantic partners of women with non-metastatic breast cancer: The protective role of couple satisfaction. J. Health Psychol. 2017, 22, 1668–1677. [Google Scholar] [CrossRef]
- Zhou, Y.; Zhang, J.; Pan, Y.; Dai, Y.; Sun, Y.; Xiao, Y.; Tang, F.; Yu, Y. Instruments for measuring the burden of family caregivers of cancer patients: A systematic review of measurement properties. J. Clin. Nurs. 2025, 34, 2479–2492. [Google Scholar] [CrossRef]
- Page, M.J.; McKenzie, J.E.; Bossuyt, P.M.; Boutron, I.; Hoffmann, T.C.; Mulrow, C.D.; Shamseer, L.; Tetzlaff, J.M.; Akl, E.A.; Brennan, S.E.; et al. The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ 2021, 372, n71. [Google Scholar] [CrossRef]
- Moher, D.; Shamseer, L.; Clarke, M.; Ghersi, D.; Liberati, A.; Petticrew, M.; Shekelle, P.; Stewart, L.A.; PRISMA-P Group. Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) 2015 statement. Syst. Rev. 2015, 4, 1. [Google Scholar] [CrossRef] [PubMed]
- Cerrone, V.; Andretta, V. Assessment Scales for Caregiver Burden in Caregivers of Cancer Patients: A Systematic Review. PROSPERO 2026 CRD420261320586. Available online: https://www.crd.york.ac.uk/PROSPERO/view/CRD420261320586 (accessed on 19 March 2026).
- Roy Rosenzweig Center for History and New Media. Zotero [Computer Software]. 2016. Available online: https://www.zotero.org/ (accessed on 5 April 2026).
- Akpan-Idiok, P.A.; Anarado, A.N. Perceptions of burden of caregiving by informal caregivers of cancer patients attending University of Calabar Teaching Hospital, Nigeria. Pan Afr. Med. J. 2014, 18, 159. [Google Scholar] [CrossRef]
- Adani-Ifè, A.; Apélété, A.; Doléagbénou, A.; Djibril, M. Burden of family caregivers of cancer patients: A cross-sectional study in a national referral oncology unit in Togo. BMC Palliat. Care 2026, 25, 41. [Google Scholar] [CrossRef]
- Abbasi, A.; Mirhosseini, S.; Basirinezhad, M.H.; Ebrahimi, H. Relationship between caring burden and quality of life in caregivers of cancer patients in Iran. Support. Care Cancer 2020, 28, 4123–4129. [Google Scholar] [CrossRef]
- Al-Daken, L.I.; Ahmad, M.M. Predictors of burden and quality of sleep among family caregivers of patients with cancer. Support. Care Cancer 2018, 26, 3967–3973. [Google Scholar] [CrossRef]
- Özönder Ünal, I.; Ordu, C. Decoding caregiver burden in cancer: Role of emotional health, rumination, and coping mechanisms. Healthcare 2023, 11, 2700. [Google Scholar] [CrossRef]
- Karimi Moghaddam, Z.; Rostami, M.; Zeraatchi, A.; Mohammadi Bytamar, J.; Saed, O.; Zenozian, S. Caregiving burden, depression, and anxiety among family caregivers of patients with cancer: An investigation of patient and caregiver factors. Front. Psychol. 2023, 14, 1059605. [Google Scholar] [CrossRef]
- Chindaprasirt, J.; Limpawattana, P.; Pakkaratho, P.; Wirasorn, K.; Sookprasert, A.; Kongbunkiat, K.; Sawanyawisuth, K. Burdens among caregivers of older adults with advanced cancer and risk factors. Asian Pac. J. Cancer Prev. 2014, 15, 1643–1648. [Google Scholar] [CrossRef] [PubMed]
- Bicer Ozturk, B.; Simsek Yaban, Z. Determination of the relationship between care burden, health anxiety and depression levels of caregivers of patients who have undergone oncological surgery. Nurs. Health Sci. 2025, 27, e70164. [Google Scholar] [CrossRef]
- Castellanos, E.H.; Dietrich, M.S.; Bond, S.M.; Wells, N.; Schumacher, K.; Ganti, A.K.; Murphy, B.A. Impact of patient symptoms and caregiving tasks on psychological distress in caregivers for head and neck cancer. Psychooncology 2019, 28, 511–517. [Google Scholar] [CrossRef]
- Borges, E.L.; Franceschini, J.; Costa, L.H.; Fernandes, A.L.G.; Jamnik, S.; Santoro, I.L. Family caregiver burden: The burden of caring for lung cancer patients according to the patient’s quality of life. J. Bras. Pneumol. 2017, 43, 18–23. [Google Scholar] [CrossRef] [PubMed]
- Kim, Y.; Given, B.A. Quality of life of family caregivers of cancer survivors: Across the trajectory of the illness. Cancer 2008, 112, 2556–2568. [Google Scholar] [CrossRef]
- Northouse, L.L.; Katapodi, M.C.; Song, L.; Zhang, L.; Mood, D.W. Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA Cancer J. Clin. 2010, 60, 317–339. [Google Scholar] [CrossRef] [PubMed]
- Novak, M.; Guest, C. Application of a multidimensional caregiver burden inventory. Gerontologist 1989, 29, 798–803. [Google Scholar] [CrossRef]
- Given, C.W.; Given, B.; Stommel, M.; Collins, C.; King, S.; Franklin, S. The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res. Nurs. Health 1992, 15, 271–283. [Google Scholar] [CrossRef] [PubMed]
- Aromataris, E.; Lockwood, C.; Porritt, K.; Pilla, B.; Jordan, Z. JBI Manual for Evidence Synthesis (2024 Update)—Critical Appraisal Tools; Joanna Briggs Institute: Adelaide, Australia, 2024. [Google Scholar]
- Weitzner, M.A.; Jacobsen, P.B.; Wagner, H., Jr.; Friedland, J.; Cox, C. The Caregiver Quality of Life Index-Cancer (CQOLC) scale: Development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual. Life Res. 1999, 8, 55–63. [Google Scholar] [CrossRef] [PubMed]
- Kent, E.E.; Rowland, J.H.; Northouse, L.; Litzelman, K.; Chou, W.S.; Shelburne, N.; Timura, C.; O’Mara, A.; Huss, K. Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving. Cancer 2016, 122, 1987–1995. [Google Scholar] [CrossRef] [PubMed]


| Study | Country | Study Design | Sample (Caregivers) | Cancer Population | Instrument Used | Key Findings |
|---|---|---|---|---|---|---|
| Chang et al., 2023 [10] | Taiwan | Cross-sectional | 107 | Oral cancer patients receiving home care | CRA | Burden associated with disrupted schedule and lack of support |
| Castilla-Soto et al., 2021 [9] | Spain | Cross-sectional | 174 | Advanced cancer patients in palliative care | ZBI | Moderate caregiver burden during early palliative care |
| Akpan-Idiok et al., 2014 [20] | Nigeria | Cross-sectional | 210 | Advanced cancer patients attending oncology clinics | ZBI | High physical, emotional and financial burden |
| Adani-Ifè et al., 2026 [21] | Togo | Cross-sectional | 123 | Hospitalized oncology patients | ZBI | Mild–moderate burden linked to disease stage |
| Alsirafy et al., 2021 [8] | Egypt/Saudi Arabia | Cross-sectional | 218 | Incurable cancer patients receiving palliative care | ZBI | Significant caregiver burden in advanced cancer |
| Abbasi et al., 2020 [22] | Iran | Cross-sectional | 154 | Cancer patients receiving treatment | CBI | Higher burden associated with poorer caregiver QoL |
| Al-Daken & Ahmad, 2018 [23] | Jordan | Cross-sectional | 111 | Hospitalized cancer patients | CBI | Burden predicted by sleep disturbance and treatment effects |
| Ünal & Ordu, 2023 [24] | Turkey | Cross-sectional | 328 | Stage IV cancer patients receiving chemotherapy | ZBI | Burden linked to emotional distress and coping |
| Karimi-Moghaddam et al., 2023 [25] | Iran | Cross-sectional | 300 | Various cancer types in oncology wards | ZBI | Burden associated with anxiety and depression |
| Chindaprasirt et al., 2014 [26] | Thailand | Cross-sectional | 150 | Elderly cancer patients with advanced disease | ZBI | Moderate caregiver burden reported |
| Bicer Ozturk et al., 2025 [27] | Turkey | Cross-sectional | 162 | Patients undergoing oncological surgery | ZBI | Burden associated with health anxiety and depression |
| Castellanos et al., 2018 [28] | USA | Observational | 89 | Head and neck cancer patients | ZBI | Caregiving task burden associated with psychological distress |
| Borges et al., 2017 [29] | Brazil | Cross-sectional | 91 dyads | Lung cancer patients | CBS | Burden associated with patient quality of life |
| Instrument | Oncology-Specific | Number of Studies | Main Domains |
|---|---|---|---|
| Zarit Burden Interview (ZBI) | No | 8 | Impact of caregiving, interpersonal strain, emotional burden, role strain |
| Caregiver Burden Inventory (CBI) | No | 2 | Time-dependence burden, developmental burden, physical burden, social burden, emotional burden |
| Caregiver Reaction Assessment (CRA) | No | 1 | Caregiver self-esteem, disrupted schedule, financial problems, lack of family support, health problems |
| Caregiver Burden Scale (CBS) | No | 1 | General strain, isolation, disappointment, emotional involvement, environmental burden |
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Cerrone, V.; Capasso, R.; Cascella, M.; Rubbi, I.; Gisi, A.D.; Di Santo, P.; Andretta, V. Measurement Instruments Used to Assess Caregiver Burden in Informal Caregivers of Adult Cancer Patients: A Systematic Review. Nurs. Rep. 2026, 16, 172. https://doi.org/10.3390/nursrep16050172
Cerrone V, Capasso R, Cascella M, Rubbi I, Gisi AD, Di Santo P, Andretta V. Measurement Instruments Used to Assess Caregiver Burden in Informal Caregivers of Adult Cancer Patients: A Systematic Review. Nursing Reports. 2026; 16(5):172. https://doi.org/10.3390/nursrep16050172
Chicago/Turabian StyleCerrone, Valentina, Rocco Capasso, Marco Cascella, Ivan Rubbi, Anna Di Gisi, Pierpaolo Di Santo, and Vincenzo Andretta. 2026. "Measurement Instruments Used to Assess Caregiver Burden in Informal Caregivers of Adult Cancer Patients: A Systematic Review" Nursing Reports 16, no. 5: 172. https://doi.org/10.3390/nursrep16050172
APA StyleCerrone, V., Capasso, R., Cascella, M., Rubbi, I., Gisi, A. D., Di Santo, P., & Andretta, V. (2026). Measurement Instruments Used to Assess Caregiver Burden in Informal Caregivers of Adult Cancer Patients: A Systematic Review. Nursing Reports, 16(5), 172. https://doi.org/10.3390/nursrep16050172

