Acromegaly in remission: a view from the partner

in European Journal of Endocrinology
View More View Less
  • 1 Aix-Marseille Université, Institut National de la Santé et de la Recherche Médicale (INSERM), U1251, Marseille Medical Genetics (MMG), Institut Marseille Maladies Rares (MarMaRa), Marseille, France
  • | 2 Assistance Publique-Hôpitaux de Marseille (AP-HM), Department of Endocrinology, Hôpital de la Conception, Centre de Référence des Maladies Rares de l’hypophyse HYPO, Marseille, France
  • | 3 Assistance Publique-Hôpitaux de Marseille (AP-HM), Department of Neurosurgery, Hôpital de la Timone, Centre de Référence des Maladies Rares de l’hypophyse HYPO, Marseille, France

Correspondence should be addressed to F Castinetti Email frederic.castinetti@ap-hm.fr
Restricted access

Objective

A relative can be an asset in dealing with chronic illnesses, such as acromegaly, where quality of life (QoL) is altered even after remission. However, it has been shown that quality of life of caregivers can also be impacted. Our main objective was to compare the perception of acromegaly in remission in the patient–relative dyad.

Methods

In this observational study, 27 patients in remission and relatives were first asked to complete QoL, anxiety/depression and coping strategy questionnaires. Then, the patient’s body image and self-esteem were evaluated from both the patient’s and the relative’s point of view using the same questionnaires with modified instructions.

Results

Relatives had overall an accurate estimation of patient body image using the Figure Rating Scale by Stunkard. However, there were wide variations between the patient’s and the relative’s responses regarding self-esteem and body perception. The QoL of relatives was not altered and was significantly higher in the social domain than for the patient.

Conclusions

Our results show that relatives require education concerning all the steps involved in the management of acromegaly, as they likely do not fully understand the sequelae of acromegaly.

 

     European Society of Endocrinology

Sept 2018 onwards Past Year Past 30 Days
Abstract Views 730 730 581
Full Text Views 69 69 50
PDF Downloads 109 109 79
  • 1

    Webb SM, Santos A, Aulinas A, Resmini E, Martel L, Martínez-Momblán MA, Valassi E. Patient-centred outcomes with pituitary and parasellar disease. Neuroendocrinology 2020 110 882888. (https://doi.org/10.1159/000506809)

    • Search Google Scholar
    • Export Citation
  • 2

    Andela CD, Scharloo M, Pereira AM, Kaptein AA, Biermasz NR. Quality of life (QoL) impairments in patients with a pituitary adenoma: a systematic review of QoL studies. Pituitary 2015 18 752776. (https://doi.org/10.1007/s11102-015-0636-7)

    • Search Google Scholar
    • Export Citation
  • 3

    Biermasz NR, Pereira AM, Smit JWA, Romijn JA, Roelfsema F. Morbidity after long-term remission for acromegaly: persisting joint-related complaints cause reduced quality of life. Journal of Clinical Endocrinology and Metabolism 2005 90 27312739. (https://doi.org/10.1210/jc.2004-2297)

    • Search Google Scholar
    • Export Citation
  • 4

    Andela CD, Biermasz NR, Kaptein AA, Pereira AM, Tiemensma J. More concerns and stronger beliefs about the necessity of medication in patients with acromegaly are associated with negative illness perceptions and impairment in quality of life. Growth Hormone and IGF Research 2015 25 219226. (https://doi.org/10.1016/j.ghir.2015.06.008)

    • Search Google Scholar
    • Export Citation
  • 5

    Weitzner MA, Knutzen R. The impact of pituitary disease on the family caregiver and overall family functioning. Psychotherapy and Psychosomatics 1998 67 181188. (https://doi.org/10.1159/000012279)

    • Search Google Scholar
    • Export Citation
  • 6

    Farina N, Page TE, Daley S, Brown A, Bowling A, Basset T, Livingston G, Knapp M, Murray J, Banerjee S. Factors associated with the quality of life of family carers of people with dementia: a systematic review. Alzheimer’s and Dementia 2017 13 572581. (https://doi.org/10.1016/j.jalz.2016.12.010)

    • Search Google Scholar
    • Export Citation
  • 7

    Stenberg U, Ruland CM, Miaskowski C. Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology 2010 19 10131025. (https://doi.org/10.1002/pon.1670)

    • Search Google Scholar
    • Export Citation
  • 8

    Tan JY, Molassiotis A, Lloyd-Williams M, Yorke J. Burden, emotional distress and quality of life among informal caregivers of lung cancer patients: an exploratory study. European Journal of Cancer Care 2018 27 e12691. (https://doi.org/10.1111/ecc.12691)

    • Search Google Scholar
    • Export Citation
  • 9

    Dunning T, Alford F. Pituitary disease – perspectives of patients and partners. Journal of Nursing and Healthcare of Chronic Illness 2009 1 139146. (https://doi.org/10.1111/j.1752-9824.2009.01014.x)

    • Search Google Scholar
    • Export Citation
  • 10

    Andela CD, Tiemensma J, Kaptein AA, Scharloo M, Pereira AM, Kamminga NG, Biermasz NR. The partner’s perspective of the impact of pituitary disease: looking beyond the patient. Journal of Health Psychology 2019 24 16871697. (https://doi.org/10.1177/1359105317695427)

    • Search Google Scholar
    • Export Citation
  • 11

    Development of the World Health Organization WHOQOL-bref quality of life assessment. The WHOQOL Group. Psychological Medicine 1998 28 551558. (https://doi.org/10.1017/s0033291798006667)

    • Search Google Scholar
    • Export Citation
  • 12

    Baumann C, Erpelding ML, Régat S, Collin JF, Briançon S. The WHOQOL-bref questionnaire: French adult population norms for the physical health, psychological health and social relationship dimensions. Revue d’Épidémiologie et de Sante Publique 2010 58 3339. (https://doi.org/10.1016/j.respe.2009.10.009)

    • Search Google Scholar
    • Export Citation
  • 13

    Webb SM, Prieto L, Badia X, Albareda M, Catalá M, Gaztambide S, Lucas T, Páramo C, Picó A & Lucas A et al.Acromegaly Quality of Life Questionnaire (ACROQOL) a new health-related quality of life questionnaire for patients with acromegaly: development and psychometric properties. Clinical Endocrinology 2002 57 251258. (https://doi.org/10.1046/j.1365-2265.2002.01597.x)

    • Search Google Scholar
    • Export Citation
  • 14

    Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 1983 67 361370. (https://doi.org/10.1111/j.1600-0447.1983.tb09716.x)

    • Search Google Scholar
    • Export Citation
  • 15

    Lépine JP, Godchau M, Brun P, Lempérière T. Evaluation of anxiety and depression among patients hospitalized on an internal medicine service. Annales Medico-Psychologiques 1985 143 175189.

    • Search Google Scholar
    • Export Citation
  • 16

    Rosenburg M Society and the adolescent self-image., 2016. Princeton University Press, USA

  • 17

    Vallieres EF, Vallerand RJ. Traduction et validation canadienne‐française de l’échelle de L’Estime De soi de Rosenberg. International Journal of Psychology 1990 25 305316. (https://doi.org/10.1080/00207599008247865)

    • Search Google Scholar
    • Export Citation
  • 18

    Koleck M, Bruchon-Schweitzer M, Cousson-Gélie F, Gilliard J, Quintard B. The body-image questionnaire: an extension. Perceptual and Motor Skills 2002 94 189196. (https://doi.org/10.2466/pms.2002.94.1.189)

    • Search Google Scholar
    • Export Citation
  • 19

    Stunkard AJ, Sørensen T, Schulsinger F. Use of the Danish Adoption Register for the study of obesity and thinness. Research Publications: Association for Research in Nervous and Mental Disease 1983 60 115120.

    • Search Google Scholar
    • Export Citation
  • 20

    Gundy CM, Aaronson NK. The influence of proxy perspective on patient-proxy agreement in the evaluation of health-related quality of life: an empirical study. Medical Care 2008 46 209216. (https://doi.org/10.1097/MLR.0b013e318158af13)

    • Search Google Scholar
    • Export Citation
  • 21

    Sneeuw KC, Aaronson NK, de Haan RJ, Limburg M. Assessing quality of life after stroke. The value and limitations of proxy ratings. Stroke 1997 28 15411549. (https://doi.org/10.1161/01.str.28.8.1541)

    • Search Google Scholar
    • Export Citation
  • 22

    Sneeuw KC, Aaronson NK, Osoba D, Muller MJ, Hsu MA, Yung WK, Brada M, Newlands ES. The use of significant others as proxy raters of the quality of life of patients with brain cancer. Medical Care 1997 35 490506. (https://doi.org/10.1097/00005650-199705000-00006)

    • Search Google Scholar
    • Export Citation
  • 23

    Muller L, Spitz E. Multidimensional assessment of coping: validation of the Brief COPE among French population. L’Encephale 2003 29 507518.

    • Search Google Scholar
    • Export Citation
  • 24

    Baumstarck K, Alessandrini M, Hamidou Z, Auquier P, Leroy T, Boyer L. Assessment of coping: a new french four-factor structure of the brief COPE inventory. Health and Quality of Life Outcomes 2017 15 8. (https://doi.org/10.1186/s12955-016-0581-9)

    • Search Google Scholar
    • Export Citation
  • 25

    Albarel F, Pellegrini I, Rahabi H, Baccou C, Gonin L, Rochette C, Vermalle M, Cuny T, Castinetti F, Brue T. Evaluation of an individualized education program in pituitary diseases: a pilot study. European Journal of Endocrinology 2020 183 551559. (https://doi.org/10.1530/EJE-20-0652)

    • Search Google Scholar
    • Export Citation