By Chiara Ghetti, MD
Associate Professor, Obstetrics and Gynecology, Division of Female Pelvic Medicine and Reconstructive Surgery, Washington University School of Medicine, St. Louis, MO
Dr. Ghetti reports no financial relationships relevant to this field of study.
SYNOPSIS: One-third of patients presenting for urogynecologic subspecialty care are caregivers. Of these, women caring for an adult are more likely to delay seeking care for pelvic floor disorders.
SOURCE: Mishra K, Locci-Molina NC, Chauhan B, et al. Delay in seeking care for pelvic floor disorders among caregivers. Female Pelvic Med Reconstr Surg 2020;26:458-463.
The main objective of this study was to determine whether being a caregiver is associated with a delay in seeking care for pelvic floor disorders (PFDs). This was a cross-sectional survey of women presenting to a urogynecology practice between 2015 and 2016. Eligible participants were identified at the time of their first visit and included women age 18 years or older who could read and write. Subjects were surveyed after the visit either in person or by telephone. A subject was deemed a caregiver if she cared for an adult or child and assisted in two or more activities of daily living or instrumental activities of daily living. The primary outcome of the study was the proportion of subjects who delayed seeking care for a PFD among caregivers vs. non-caregivers. Subjects were queried with the question “How long did you wait before talking with a healthcare provider about either a pelvic floor disorder or a condition that you marked above?” Reponses of one year or more to this question were considered delay in care. Subjects were asked to complete several validated questionnaires, including the Pelvic Floor Disability Index (PFDI), Pelvic Floor Impact Questionnaire (PFIQ), Pelvic Organ Prolapse/Urinary Incontinence Sexual Questionnaire (PISQ), and Patient-Reported Outcomes Measurement Information System (PROMIS) short forms. Caregivers were asked to complete additional caregiving surveys, including a validated measure of burden.
The study identified 413 eligible patients, of which 256 (62%) completed the survey. The mean age of participants was 59 years, the majority were white (85%) and had a college education or greater (67%), and half were married. Of the 256 participants, one-third were caregivers. Two-thirds of caregivers cared for a child younger than 18 years of age, with the remainder caring for an adult child, spouse or partner, or parent. A large proportion of subjects reported PFD symptoms for one year or more, and there was no difference between caregivers and non-caregivers (74% and 64%, respectively, P = 0.09) who had symptoms for one year or more. There also was no significant difference between these groups in the proportion of subjects who waited one year or more before discussing their symptoms with a healthcare provider (42% vs. 54%, P = 0.08). A subset analysis found that subjects caring for adults compared to non-caregivers were more likely to report PFD symptoms for one year or more (92.9% vs. 63.0%, P = 0.001). These caregivers of adults also reported waiting for a year or more before discussing PFD symptoms with a provider when compared to non-caregivers (75% vs. 42%, P = 0.001).
This is one of the first studies exploring the role of caregiving in the care of pelvic floor symptoms. The key findings of this study are that one-third of women presenting to a urogynecology office are caregivers. The majority of these caregivers care for a child younger than age 18 years, and 11% care for an adult. Caregiving in general was not associated with delaying care for PFDs. However, caring for an adult was associated with delaying care.
Caregiving has a significant multidimensional effect on caregivers and increasingly has been associated with a decrease in self-care and negative health effects. The National Alliance for Caregiving’s “Caregiving in the U.S. 2020” reports that 53 million adults, or one in five Americans, have been caregivers in the past 12 months.1 This estimate has increased from the 2015 report, which estimated 43.5 million caregivers in the United States. The report outlines the intensity or complexity of the caregiving situation using the Level of Care Index as a measure of caregiver burden using time spent providing care as well as the number of activities of daily living performed by the caregiver. A large portion of caregivers (40%) experience high-intensity situations, with 16% experiencing medium intensity, and the remainder experiencing low intensity. The 2020 update reports on a dramatic decrease in caregiver self-rated health compared to 2015. This decline is seen primarily in caregivers ages 18 to 49 years, of which 40% now report excellent or very good health, compared to 52% in 2015. A clinical review by Adelman et al lists the following risk factors for caregiver burden: female sex, low educational attainment, living with the care recipient, depression, social isolation, financial stress, higher number of hours providing care, and lack of choice in providing care.2
The 2020 National Alliance for Caregiving report also found that fewer than three in 10 caregivers had been asked by a healthcare provider, such as a doctor, nurse, or social worker, about what they needed to care for their care recipient. Only 13% report being asked by a healthcare provider about what they need to care for themselves.1
The study by Mirsha et al included only patients seeking care. It brings to our attention that a large number of our patients are primary caregivers. Since self-care is difficult for caregivers, it is not known how many female caregivers with PFDs are not seeking care. Caregiving has a significant negative effect on health outcomes. As health providers for women, we can help our patients by screening and acknowledging their caregiver status, identifying caregivers at risk of negative health outcomes and those who have specific self-care needs, and intervening to lessen the stress associated with the caregiving experience.
- National Alliance for Caregiving. Caregiving in the U.S. 2020. May 2020. https://www.caregiving.org/caregiving-in-the-us-2020/
- Adelman RD, Tmanova LL, Delgado D, et al. Caregiver burden: A clinical review. JAMA 2014;311:1052-1060.