Who cares, who bears, who benefits? Female spouses vicariously carry the burden after cancer diagnosis

Abstract

Background and aim: Among couples coping with cancer diagnosis, the effects of gender, role (patient vs. spouse) and patient relationship status (single vs. partnered) on quality of life (QoL) have been investigated with inconsistent results. The present study examined the impact of gender, role and relationship status on male and female patients, their spouses and non-partnered patients. Method: A representative sample of 218 patients with a new primary cancer diagnosis (any type and stage) and their spouses (n = 137), were assessed within 8 weeks of diagnosis. Measures assessed multiple QoL dimensions including health-related and dyadic QoL as well as symptoms of distress: (anxiety, depression, intrusion, avoidance and hyperarousal). Results: Multivariate analyses of covariance revealed lower QoL for women versus men, and for spouses versus patients on a number of measures (health-related QoL, satisfaction with dyadic coping, anxiety and intrusions). Conclusions: Female spouses of cancer patients are at high risk of deteriorated QoL immediately after diagnosis, and require special attention to their psychosocial care needs.

Keywords:

• adjustment to cancer
• quality of life
• role
• gender
• spouses

Acknowledgements

We would like to express our gratitude to all the participants of this study. We also would like to thank the many doctors at the Kantonsspital Aarau and regional hospitals, family doctors, private oncologists H. Michel and U. Müller, B. Berger, J. Skorek, Bündner Krebsliga, B. Leuthold and Krebsliga St. Gallen-Appenzell, all of who helped with the recruitment. The authors especially wish to acknowledge the contribution of R.H. Laeng and the staff of the Department of Pathology, Kantonsspital Aarau. This study relies on their continuous supply with anonymised diagnostic data. Further thanks go to Marc Lächler for helpful comments on an earlier version of this manuscript and Katrin Grendelmeier and Robert Richardson for language help. We also acknowledge helpful comments by Diana Zwahlen.

This research was supported by Swiss Cancer League (NPK-01432-08-03, OCS-01741-08-2005) and Krebsliga Aargau.

The authors declare that:

• this research has been approved by the regional ethics committee and was carried out in accordance with universal ethical principles;

• there is no conflict of interest; and

• this manuscript contains original unpublished work and is not submitted for publication elsewhere.

No part of the work has been previously published, except for study design and pilot data poster presentations:

Kuenzler A., Zindel A., Bargetzi M., & Znoj, H.J. (2004, August). Coping with Cancer – Outline of a one-year longitudinal study of individual and dyadic coping effects. Poster presented at the World Congress of Psycho-Oncology, Copenhagen, Denmark. Psycho-Oncology, 13(Supp.), S192.

Kuenzler, A., Zindel, A., Bargetzi, M., & Znoj, H.J. (2005, September). Couples coping with a recent diagnosis of cancer – pilot results. Poster presented at the annual conference of the European Health Psychology Society, Galway, Ireland. Psychology & Health, 20(Supp. 1), 139.

Kuenzler, A., Zindel, A., Bargetzi, M., & Znoj, H.J. (2006, October). Coping and quality of life in couples affected by cancer: Individual and dyadic measures diverge. Poster presented at the 8th World Congress of Psycho-Oncology, Venice, Italy. Psycho-Oncology, 15(Supp. 2), S294.

Notes

Notes

1. The term patient refers to the person with cancer, the term spouse refers to the person with whom they are in a relationship; partner is used to refer to the counterpart – be it the patient or spouse.

2. The exception was inpatient primary doctors. Their reporting rate was 40%. Reasons identified for not reporting patients included doctor's lack of time or interest, patient contact too brief, sparing the patient the burden of the study or an additional study, poor state of health (at advanced stage of disease), fear of giving rise to inappropriate concerns (at early stage of disease), and patient's lack of interest. Accessible anonymised data allowed for comparisons between the reported 40% subgroup and the 100%-group, including those reported and those not reported by primary doctors. Differences were found with regard to age and tumour site: the reported subgroup was younger, on average (57 vs. 65 years; p = 0.000, t-test); male genital cancers were underrepresented (6% vs. 21%), and haematologic/lymphatic cancers were overrepresented (18% vs. 4%; both p = 0.000, chi-square-tests).

3. Since some of the partnered patients do not have their spouses included in the study, the n for these two groups are not equal. We made a decision to retain all patients in the study in order to keep the sample representative. MANCOVA procedures have been found to be robust against varying n if n > 10 and variances are homogenous. Our group sizes are >10 in all cases and group variances are homogenous (Levene test).

4. We chose the criterion of living or not living together to separate single and partnered patients as we assumed a quantitative and possibly qualitative difference in partners' mutual level of dependence.

5. The correlation matrix shows that certain outcomes are substantially related within couples (Table 3, shadowed diagonal). We therefore did supplementary within-couple analyses (using difference scores, e.g., patient anxiety score minus the patient's spouse anxiety score; one sample t-test on the difference against zero). These analyses largely confirmed the above findings: Besides better somatic QoL, higher anxiety and more intrusions were found among spouses compared to patients (p < 0.001; n = 137 couples). In addition, more hyperarousal symptoms emerged for spouses than for patients (p = 0.001). Furthermore, separate t-tests for males and females using the same within-couple difference scores confirmed and added to these gender effects: for female-patient couples, the only difference between partners was in somatic QoL (lower for women patients than for their husbands). On the contrary, among male-patient couples, besides lower somatic QoL, men patients exhibited better health-related mental QoL (p = 0.001), less anxiety, intrusions and hyperarousal (p < 0.001), as well as higher dyadic coping support (p = 0.003) compared to their female spouses.