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

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

Abstract

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.

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.

Structural equation models showed that endometrial cancer patients who experienced more symptoms or concern due to the SCP reported worse social functioning (beta = - 0.82; p = 0.01) and more fatigue, insomnia, pain, and anxiety (beta = 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 (beta = 0.27, p = 0.02).

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.

Original languageEnglish
Pages (from-to)1533-1544
JournalQuality of Life Research
Volume27
Issue number6
DOIs
Publication statusPublished - 2018

Keywords

  • Survivorship care plan
  • Information provision
  • Gynecologic cancer
  • Illness perception
  • Quality of life
  • Anxiety
  • RANDOMIZED CONTROLLED-TRIAL
  • BREAST-CANCER
  • COLORECTAL-CANCER
  • REPORTED OUTCOMES
  • QUESTIONNAIRE
  • HEALTH
  • DEPRESSION
  • PEOPLE

Cite this

@article{55c6eb3158884d2aa08c2a2e0eafcd83,
title = "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",
abstract = "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.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.Structural equation models showed that endometrial cancer patients who experienced more symptoms or concern due to the SCP reported worse social functioning (beta = - 0.82; p = 0.01) and more fatigue, insomnia, pain, and anxiety (beta = 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 (beta = 0.27, p = 0.02).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 = "Survivorship care plan, Information provision, Gynecologic cancer, Illness perception, Quality of life, Anxiety, RANDOMIZED CONTROLLED-TRIAL, BREAST-CANCER, COLORECTAL-CANCER, REPORTED OUTCOMES, QUESTIONNAIRE, HEALTH, DEPRESSION, PEOPLE",
author = "{de Rooij}, {Belle H.} and Ezendam, {Nicole P. M.} and Nicolaije, {Kim A. H.} and Paul Lodder and Vos, {M. Caroline} and Pijnenborg, {Johanna M. A.} and Dorry Boll and Kruitwagen, {Roy F. P. M.} and {van de Poll-Franse}, {Lonneke V.}",
year = "2018",
doi = "10.1007/s11136-018-1825-4",
language = "English",
volume = "27",
pages = "1533--1544",
journal = "Quality of Life Research",
issn = "0962-9343",
publisher = "Springer",
number = "6",

}

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

In: Quality of Life Research, Vol. 27, No. 6, 2018, p. 1533-1544.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

T1 - Survivorship care plans have a negative impact on long-term quality of life and anxiety through more threatening illness perceptions in gynecological cancer patients

T2 - The ROGY care trial

AU - de Rooij, Belle H.

AU - Ezendam, Nicole P. M.

AU - Nicolaije, Kim A. H.

AU - Lodder, Paul

AU - Vos, M. Caroline

AU - Pijnenborg, Johanna M. A.

AU - Boll, Dorry

AU - Kruitwagen, Roy F. P. M.

AU - van de Poll-Franse, Lonneke V.

PY - 2018

Y1 - 2018

N2 - 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.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.Structural equation models showed that endometrial cancer patients who experienced more symptoms or concern due to the SCP reported worse social functioning (beta = - 0.82; p = 0.01) and more fatigue, insomnia, pain, and anxiety (beta = 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 (beta = 0.27, p = 0.02).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.

AB - 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.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.Structural equation models showed that endometrial cancer patients who experienced more symptoms or concern due to the SCP reported worse social functioning (beta = - 0.82; p = 0.01) and more fatigue, insomnia, pain, and anxiety (beta = 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 (beta = 0.27, p = 0.02).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.

KW - Survivorship care plan

KW - Information provision

KW - Gynecologic cancer

KW - Illness perception

KW - Quality of life

KW - Anxiety

KW - RANDOMIZED CONTROLLED-TRIAL

KW - BREAST-CANCER

KW - COLORECTAL-CANCER

KW - REPORTED OUTCOMES

KW - QUESTIONNAIRE

KW - HEALTH

KW - DEPRESSION

KW - PEOPLE

U2 - 10.1007/s11136-018-1825-4

DO - 10.1007/s11136-018-1825-4

M3 - Article

VL - 27

SP - 1533

EP - 1544

JO - Quality of Life Research

JF - Quality of Life Research

SN - 0962-9343

IS - 6

ER -