Assessing information needs on bone health in cancer survivors - Beyond the Abstract

Osteoporosis is a skeletal problem characterized by decreased bone mass and the deterioration of its microarchitecture making the bone prone to fractures. It is usually associated with aging, occurring in postmenopausal women and elderly men. Osteoporosis becomes clinically manifest when it results in a fracture. About 1.5 million osteoporotic fractures are recorded in the United States every year. Osteoporotic fractures in the older patient result in a

marked decrease in quality of life due to such factors as pain, restricted mobility, isolation and depression. About 20% of older patients suffering a hip fracture die within one year, from the injury or complications of its treatment. Osteoporotic fractures place about 180,000 people in nursing homes and costs the healthcare system $18 billion each year.

Osteoporosis has become an important issue in people with a history of prostate or breast cancer.  Anticancer agents may have direct toxic effects on bone, some chemotherapeutic agents may induce hypogonadism and the prolonged use of steroids as part of treatment in certain cancers may all contribute to the development of osteoporosis. A significant factor in the development of osteoporosis is the use of androgen deprivation treatment (ADT) in all its forms in the treatment of prostate cancer, and the use of aromatase inhibitors (AI) in the treatment of hormone receptor-positive breast cancers. 

While therapeutic agents are available for the prevention of osteoporosis, lifestyle management such as engaging in weight bearing exercises, intake of calcium and vitamin D supplements, avoidance of smoking and excessive alcohol intake could prevent or slow down the development of osteoporosis. 

We undertook this study, to understand what prostate and breast cancer survivors need to know about osteoporosis (its prevention and treatment strategies) to feel well-informed, promote compliance to treatment, and self-efficacy. We used a mixed-methods approach; we determined qualitatively and quantitatively the areas of knowledge deficit in osteoporosis. First, twenty patients comprising 10 breast and 10 prostate cancer survivors were interviewed. We asked what their thoughts were about osteoporosis and its treatment, what they know and what they wanted to know as well as their preferred source of health information. Two validated knowledge questionnaires were administered to another 20 survivors to objectively assess their knowledge on osteoporosis and identify any areas of deficit. 

The qualitative interviews revealed that participants generally knew what osteoporosis was but lacked details on causes, risk factors, treatment and prevention. Some indicated that exercises, use of calcium and vitamin D supplements were self-management behaviors they could undertake to improve their bone health. Participants were concerned about the effect of their cancer medications on the bone. They were of the opinion that providing information could help address their concerns as well as promote compliance with healthy lifestyles and treatment.  They would also use the information in educating family members and to initiate conversation with their healthcare providers. Friends and family who would want more information would be advised to go on the Internet or talk to their physicians. The knowledge questionnaires revealed areas of knowledge deficit to include risk factors, prevention and treatment of osteoporosis among others. It was also shown that participants’ perceived knowledge did not match their low performance on the knowledge questionnaires. These findings indicate a problem of inadequate information on osteoporosis even in highly educated prostate and breast cancer survivors who had been on IAs or ADT. 

The Internet was their preferred information source. However, the information would be more acceptable if they knew it came from a reputable source. Although the Internet has a number websites that provide some information on osteoporosis, none is specifically designed to meet the information needs of cancer survivors. It may be desirable to have an educational website on osteoporosis designed for cancer survivors addressing such issues as the general characteristics of osteoporosis, risk factors, prevention and treatment.

Written By: Jude K. A. des Bordes1, MBChB, DrPH, Noha Abdel-Wahab1,2, MD, PhD, Maria Suarez-Almazor1, MD, PhD, Maria A. Lopez-Olivo1, MD, PhD

 

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Authors’ Affiliation

1. Department of General Internal Medicine, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd, Unit 1465 Houston TX 77030, USA

2. Rheumatology and Rehabilitation Department, Assiut University Hospital, Egypt