Osteoporosis Resources for Primary Care: Information

At the initial consultation, where the diagnosis of osteoporosis is shared with patients, physicians and specialist nurses can positively influence adherence to treatment by clear and detailed explanation of:

• Low bone mineral density (BMD) and fracture risk
• How osteoporosis and fractures may affect them
• The need for treatment
• The benefit of treatment
• How to take the treatment correctly
• The timescale in which benefit may be achieved along with the disease prognosis
• Potential adverse effects of medications and what can be done if side effects are experienced

This needs to be reinforced by giving written literature specific to the needs of the patient, incorporating information on the diagnosis, medication and lifestyle measures. A range of information leaflets suitable for the general public are available from the NOS website and paper copies can be provided free of charge for use with your patients. Patients should be advised about the benefits of staying on treatment rather than just focusing on the risks associated with stopping treatment. Currently, half of patients receive no information regarding the importance of continuing medication. In the case of calcium and vitamin D, cycling a variety of preparations may improve compliance if patients are experiencing gastrointestinal side effects.

Newer treatments involving health professionals administering intravenous or subcutaneous medication alternatives have the potential to improve compliance as the medication is given in the presence of the health professional and at longer intervals.

Other opportunities to provide information and education include:

• Medicine reviews carried out by community pharmacists
• Medication reviews in Primary Care
• Support programmes, delivered by a variety of professionals in primary and secondary care, voluntary bodies, charities and non-promotional pharmaceutical company initiatives involving patient prompting by post, telephone, text and email. These initiatives often have an educative element, providing information about the disease, a healthy lifestyle and the need to remain compliant with medication
• Improving public awareness of fragility fracture risk and lifestyle factors via statutory health bodies, charities and voluntary bodies, and non-promotional teams within the pharmaceutical industry

Referral to a bone specialist or specialist bone centre should result from an assessment of the patient's individual needs and circumstance.

The decision to refer to Secondary Care is often multi-factorial and influenced by resource factors with respect to access and expertise within Primary and Secondary care as well as those pertaining to the patient.

• Secondary cause identified or suspected (i.e. BMD Z-score < 2; Z-scores provide a comparison, in terms of standard deviations, to the average BMD measurement for the patient's age group)
• Initial assessment indicating unexpectedly severe osteoporosis
• Unusual features at the time of initial assessment (i.e. large variability between T-scores in lumbar spine and hip)
• Having a suspected or known condition that may underlie osteoporosis, particularly in men and pre-menopausal women, where management may be more complex
• Presence of complex comorbidities
• Continuing to experience fragility fractures despite normal bone density
• Presence of fragility fractures due to other bone disease (i.e. Paget's disease, metastatic bone disease)
• Patient choice to be referred to Secondary Care

• Contraindications to oral therapy (i.e. oral bisphosphonates, or raloxifene if appropriate), if your local CCG does not allow initiation of denosumab in primary care.
• Adverse effects and difficulties with standard therapies (i.e. patients unable to take or tolerate the usual oral therapies or contraindications to therapy)
• Failing to respond to current treatment (i.e. continuing to fracture despite the patient being compliant with therapy for 1 year or more)
• Requiring complex therapy, in some cases intravenous therapy with bisphosphonates
• Where there is no Primary Care access to the required treatments or therapies (i.e. women meeting the criteria for parathyroid hormone/teriparatide)
• Painful acute vertebral fractures or multiple vertebral fractures (for pain control; assessment of suitability for kyphoplasty or vertebroplasty is also recommended)

• Lack of direct access to appropriate investigations (e.g. poor local provision of bone densitometry, difficulties in establishing a secure diagnosis, blood tests to exclude secondary causes or vitamin D assessment)
• Lack of access to appropriate services within primary care, specialist physiotherapy, pain clinics, neurosurgical or spinal surgeon opinion
• Required expertise only available within Secondary Care

As with many other chronic conditions, approximately half of patients prescribed treatments for osteoporosis stop treatment within 12 months. Many fail to tell their GP or health professional that they have stopped taking their medication. Most who stop therapy do so within the first few months and the median duration of oral therapy is 1.2 years.

Studies have shown that there is a discrepancy between health professionals' perceptions of the reasons for poor compliance and those cited by patients. Studies have indicated that health professionals think that lack of understanding is the driving force for stopping medication while patients state that it is the difficulty of taking the medication, side effects and convenience-related factors that determine compliance and persistence in therapy. We also need to recognise that some patients will simply not want to take drug treatments for prolonged periods.

Factors responsible for poor adherence and persistence are not well understood and patients may discontinue therapy for a number of reasons. This is often multifactorial in aetiology and results from a combination of the following factors:

• Lack of motivation to continue medication
• Adverse effects
• Inconvenient dosing
• Safety concerns and adverse publicity

Encouraging patients to report difficulties (real or perceived) so that these can be discussed along with possible options and solutions can promote better adherence and persistence. Giving patients written information regarding their medication (how the medication works, the correct way in which it has to be taken, the potential side effects and what to do if they occur) can also encourage patients to continue with medication. Following patients up and advising them that this will be the case gives them the opportunity to discuss any difficulties they may have and many will persist in the short term until this review takes place. Such reviews are increasingly being done by telephone and studies have shown that compliance improves where patients are contacted by nurses 6 to 8 weeks after commencing therapy to see how they are faring with the medication prescribed for them. This not only engenders feelings of support and interest but reinforces the importance of persisting with and adhering to treatment regime. Compliance has been shown to be improved to 81% at 18 months after starting treatment within FLSs where Specialist Nurses contact the patient at standardised intervals to problem-solve and remind patients regarding medication.

The Practice Nurse can play a key role in supporting patients to adhere to their treatment and manage their condition. For more information, refer to the 'Practice Nurses' section of this resource.