Survivorship care plans have a negative impact on long-term quality of life and anxiety through more threatening illness perceptions in gynecological cancer patients: the ROGY care trial

Belle H de Rooij, Nicole P M Ezendam, Kim A H Nicolaije, Paul Lodder, M Caroline Vos, Johanna M A Pijnenborg, Dorry Boll, Roy F P M Kruitwagen, Lonneke V van de Poll-Franse, Belle H de Rooij, Nicole P M Ezendam, Kim A H Nicolaije, Paul Lodder, M Caroline Vos, Johanna M A Pijnenborg, Dorry Boll, Roy F P M Kruitwagen, Lonneke V van de Poll-Franse

Abstract

Purpose: Prior results from the registration system oncological gynecology (ROGY) care trial showed that survivorship care plans (SCPs) increased threatening illness perceptions in gynecological cancer survivors, but it remained unclear whether this would result in poorer physical and psychosocial outcomes. The aim of the current study is to assess the direct and indirect effects of SCPs on health-related quality of life (HRQoL) and anxiety and depression, through illness perceptions.

Methods: Twelve hospitals in the South of the Netherlands were randomized to providing 'SCP care' or 'usual care.' Newly diagnosed endometrial and ovarian cancer patients completed questionnaires after initial treatment (endometrial, 221 [75%]; ovarian, 174 [71%]) and after 6, 12, and 24 months. SCPs were automatically generated after initial treatment by the oncology providers through the web-based ROGY. Illness perceptions were measured after initial treatment and HRQoL and anxiety and depression after 6, 12, and 24 months.

Results: Structural equation models showed that endometrial cancer patients who experienced more symptoms or concern due to the SCP reported worse social functioning (β = - 0.82; p = 0.01) and more fatigue, insomnia, pain, and anxiety (β = 0.58-0.86, p < 0.05) within 12 months after treatment. Ovarian cancer patients who had lower trust that the treatment would cure their disease due to the SCP reported worse emotional functioning 6 months after treatment (β = 0.27, p = 0.02).

Conclusions: Current results show that SCPs may have negative effects on HRQoL and anxiety in patients who experience more threatening illness perceptions due to the SCP. We should be aware of the potential negative consequences of SCPs. Trial Registration clinicaltrials.gov Identifier: NCT01185626.

Keywords: Anxiety; Gynecologic cancer; Illness perception; Information provision; Quality of life; Survivorship care plan.

Conflict of interest statement

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

The ROGY care trial was centrally approved by a Medical Research Ethics Committee, as well as by each participating center [21]. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Figures

Fig. 1
Fig. 1
Bar charts of illness perceptions after diagnosis, SCP care (SCP) versus usual care (UC). Note only the illness perception items were included that have earlier been associated with trial allocation. High, med-high, med-low, and low illness perception categories were defined by the 25th, 50th, 75th, and 100th percentile scores of each B-IPQ scale separately
Fig. 2
Fig. 2
Path diagrams of the final structural equation models, outcomes 6 and 12 months after treatment. Note only the significant paths between the intervention (SCP), illness perception items, and outcome scales were entered in this model to obtain good model fit. Standardized coefficients are shown. Standardized beta coefficients were used to interpret the models, and range from − 1 to 1, in which coefficients closer to zero indicate smaller effects. Error terms and covariates in the model (age, FIGO stage, number of comorbidities) have been removed from the figure. *p < 0.05; **p < 0.01

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